Embrace the Endeavor for Normalcy

There are often two very different opinions related to bleeding disorders and self-disclosure. I think it is one of the biggest line-in-the-sand, take-a-side-and-do-not-ever-change topics that I discuss with fellow bleeders, their parents, friends and relatives. On one hand you have the individuals who are open and honest with most everything related to their bleeding disorder including posts and pictures of their most recent mishap or “adventure” on Facebook.  On the other hand, you have the individuals whose immediate family and relatives know but haven’t told their best friends, let alone shared information on Facebook or social media. On which side of the sand do you stand?

I used to work in Higher Ed (Higher Education) and we always had these activities focused on self-awareness. We would have the group we were working with (usually a group of individuals we were trying to show new perspectives or experiences) stand in a line against the wall and face the instructor. The instructor would then make a statement or ask a question (i.e. have you been a victim of bullying, have you ever had thoughts about harming yourself… usually serious stuff, but luckily for me the question was never have you ever pooped your pants) and if you identified with that statement or answered yes you would take a step forward for that question and then retreat back and wait for the next question. The goal was for people to have an opportunity to show snippets of their life experiences if they chose to start a more serious and in depth conversation later (you didn't have to step forward if you didn't want to because some of the questions were very serious). There was also a focus on not judging individuals because, usually, you really don’t know an individual from a first impression. If it was done correctly it was a very powerful tool for team-building and creating a positive group dynamic that encouraged the desire for personal growth and improvement.

I feel bleeders go through a similar process when the dilemma comes up whether or not to tell people outside of the home that they are not “normal” or that they’re a bleeder. Albeit the process we go through can be more challenging than taking a step forward during a 15-minute team-building exercise. I also think we judge each other, too, just like people probably judge each other in that activity. I have participated and conducted that activity many times (trying to get my master’s degree they do a plethora of that stuff) and I judge the piss out of the people because it sparks your desire to rationalize why they stepped forward. I thought about people that should or shouldn't have stepped forward and I am confused or astonished watching those who did or didn't. The process of telling people today that I am a bleeder is so much more difficult than when I was growing up, because of the ways people connect and interact now. Word of mouth traveled faster than lightning when I was a young lad and now it only takes minutes, whereas before it was hours or days before everybody knew that Billy tried to kiss Bobbi but Bobbi didn't want him to, but Billy tried anyways and that is why Billy’s private parts hurt right now. To make it worse, electronic media make it so much easier for people to say whatever they want without the threat of getting punched, threatened or shoved into a toilet full of poo. So although I tell people that I am bleeder these days and I am pretty open about it, I don’t have school every day. I don’t have kids waiting to pick on me or make fun of me for being different.

There really isn't an opportunity anymore to share with a handful of close friends that you are different, that your life isn't the same and you can’t do things that other people can do because people talk too much. When I first started sharing is when I felt like an immediate outsider; someone looking into the group wishing they were a part of it and hoping it would change. It was hard because they couldn't understand at the ripe young age of ten. I didn't look different physically, although I remember some girl asking me if I had hemophilia because I was skinny. Sometimes it was hard and I can understand people who don’t tell anybody that they have hemophilia. My best bleeder friend didn't tell anyone he had hemophilia. He would go an entire day with a bleed at school and infuse at home because he didn't want people to know and deal with drama. My experience sure does conclude that I could have saved myself some trouble by not telling anyone, but I don’t know if I would change anything if I had the chance to go back.

After awhile I started to embrace the fact I was different and used it to my advantage, but not to get out of school work or tests. Although, when I was a kid my mom was called the principal’s office because some kid hit me at recess. The kid was suspended because they hit the “bleeder.” My mom though, being the ever conscious parent of an asshole, asked the principal why they didn't suspend me. The principal responded that I was the one that was punched and that since I was a bleeder they suspended the other kid. They made it seem like the circumstance of why didn't matter which was awesome. My mom replied, you obviously don’t know my son very well because he probably deserved to get punched (love you too?). The principal and my mother then found out that the kid and I were playing kick ball and I was the third baseman. The kid was on third base and was going to try and score on the next kicked ball. Well the kid’s teammate kicked the ball and I was (am still) super competitive so I grabbed a hold of the kid to prevent him from scoring so we could get the third out. The kid punched me to let go of him, hence my mom was very right. The recess teacher watched all of this and for some reason had the rationale that even though I bear hugged the crap out of this guy and tried to tackle him that since I was a bleeder and got punched that the other kid was 100% responsible and I was 0% responsible. My mom needless to say got me suspended as well.

Although some times were tough, I felt special (in a good way) because I had this disorder and I got positive attention and I was able to sound really smart explaining it to my peers. They would often ask me questions and sometimes spend hours going over different scenarios about what they should do for me in certain situations. It was these interactions that lead me to give a grade-wide presentation about my bleeding disorder. It started out as a small presentation and turned into all 150 kids filing into the cafeteria for me to give a presentation about hemophilia, including the genetics of how one gets it and passes it on or is a mutation. I also did an infusion which was really cool because all of the girls leaned back and all of the boys leaned forward as I pulled out the needles to mix the factor and eventually infuse. It was from this presentation that I really started to embrace the fact that I didn't have something that made me different or weird or that I wasn't normal, but I was better than the other kids (can you tell I am competitive?). I had something other kids didn't have and couldn't have. I had something that required me to do things that would make most kids freak out and punch a baby. I really was better than other kids in a sense because I had to do this to survive; it wasn't something that I could do if I wanted to. It’s not like a headache where I can suffer through it or be a puss and take a Tylenol if it got too painful. It felt like it clicked for me when I came to the realization that there are things that really suck about having a bleeding disorder… I mean really suck, things that I wanted to do so badly I would punch the first thing that I saw which, unfortunately for my sister, seemed to be her a lot (don’t tell her that I would purposely seek her out) but I couldn't because I was a bleeder. However, this part of having a bleeding disorder really made me embrace the fact that I wasn't normal and started to kind of like it.

I continued to do those talks each year and still do them today. I actually gave a talk right before Thanksgiving break to my old middle/high school. It was a class of seventh graders who were talking about genetic mutations and, although I couldn't clench my fists and have adamantium bonded claws extract to defend myself, I had something rare. I spoke about what hemophilia is and spent time on how you get it and pass it on or is a mutation (sound familiar? Love CTRL-C and CTRL-V). I also demonstrated how I currently do an infusion and the different ways that I tried to treat the disease when I was younger using plasma, cryoprecipitate and so on. Although it sounds strange, giving these presentations brings me back to the old days of when I first discovered how I can use being a bleeder for good and not evil, even though I tried. It was then that I started to feel like I was normal. Maybe because I had done it so many times that it would have been weird not to do it. It might have been because after a while, that is how people started to see me. They saw just another kid that sometimes had to do some stuff that other didn't to stay healthy. My mom presented with me this past year because she usually will do the presentation if I am not able to. So she was talking about how a normal person’s blood clots and this girl passed out, straight up fainted and destroyed her face on the tile floor. It sounded like a car door shut when she hit. I then had a kid go down when they saw blood return in the butterfly needle, but luckily the teacher saw him turn white and caught him as he was falling to the ground. Stuff like that just makes me think of what I go through and what other bleeders go through everyday just to stay healthy. It just amazes me (obviously because I have a different life experience) that some people are afraid or don’t like hospitals, doctors, nurses or needles. So for me it was very normal but for others, who have never stayed the night in hospital, it could be weird, different, scary, uncomfortable or torture.

My progression trying to be normal took awhile and it was bumpy. I got teased and made fun of and my answer was obviously anger and violence, but I learned that on my own and not from stupid video games like kids these days. I remember getting into a tussle with a kid in gym class for making comments as we were running laps to start the class. I don’t know how he tripped or how he got kicked while he was on the ground but it looked like it hurt. Obviously, I didn't handle it the best way and there were multiple things I should have done instead. At times I questioned why I chose to be so honest and open about being a bleeder because I saw friends not telling anyone and living what seemed to be a much normal life. I most often would make fun of myself and crack jokes about being a bleeder as a way to make it more comfortable for other people and sometimes they would purposely try to hurt my feelings by making fun of me. Eventually though, people learned that I could joke just as good as they could and it didn't work to try and make fun of me because I was already making fun of myself. My friends started sticking up for me, as well, and started using some of the same jokes I used that were innocent and entertaining when people tried to make fun of me when I wasn't around.

After I was comfortable with who I was and had finally found a way to be as normal as I could within my peer group I started to see what other bleeders went through trying to be normal. Most of them would be in extreme physical pain since they didn't want to infuse at school and have people find out. I could tell it was very hard and I would be like, "Dude, just tell people and get it off your chest." However, they didn't and I am glad, because my endeavor to become normal was different than my friends'. I don’t know the right answer and I don’t think there is a right answer. I think you do what you are comfortable with because, unfortunately, there will probably be pain no matter what you choose to do. For me it was easier to share and to start giving presentations to my entire grade, but that may not be what you should do. Share or don’t share, embrace or fight it, educate or let them wonder, but definitely buckle up because trying to be normal isn't going to be easy, especially once you realize that you aren't ever going to be normal having a bleeding disorder. You are going to be better because you have a bleeding disorder.

ShootUp at #NHF2012

As another annual meeting for the hemophilia community approached, I was encouraged to put together a pickup basketball game. This would be the 2nd official pickup game I would hold at an annual meeting. The first ShootUp basketball event took place in Santa Clara, California, on the final day of the HFA Symposium in March, earlier this year.

Please read my previous post Ball So Hard(ly) to see how that went down.

The response to the get together was undoubtedly a positive one. Guys that attended wanted to make this an ongoing tradition. Most of those that attended the outing are guys that tend to travel to the annual meetings every year. So the planning for the NHF Annual Meeting in Orlando in November 2012 started almost immediately as I got home from California in March. Eight months was our deadline.

I was lucky enough to have some support in planning the second event. We wanted to grow the event, encouraging more guys to attend, but also to get the word out that this event (that started with the idea of a pickup b-ball game) was going to happen at every national meeting from here on out. The road to tradition was in the making. We really wanted to establish the brand of the event. I really wanted to get jerseys ordered for the guys that were definitely going to be attending the second annual game. I also knew that with the annual conference being in Orlando, there were several other events happening at some pretty amazing locations, so I needed to find a venue that would have enough draw to encourage guys to come out to the event.

The NHF Annual Meeting kicked off in Orlando with much anticipation. The largest gathering of hemophiliacs every year, this year was no exception. Over 3,000 attendees from all over the world descended upon Orlando and a melee of social networking, reuniting with lifelong friends, and informative educational workshops and breakout sessions followed - nothing short of spectacular, in my humble opinion. I chose the final day of the conference to be our game day. I felt obligated to let all the guys be able-bodied and uninjured for the meeting, because nothing slows you down more at an annual meeting than a hemophiliac swagger limp. For that reason, I encouraged everyone that I knew was going to attend ShootUp to do their prophylactic treatments before we played. The event was just for fun, but some guys consider competitive sports as their fun, and I wanted to ensure that everyone enjoyed themselves and we prevent any serious injuries.

Saturday morning arrived with sun in the sky and a cool breeze. As we gathered in the hotel lobby, I was happy to see a group of guys gathering looking like they were ready to go hard... well, as hard as one can expect at 8:30AM on a Saturday morning after two days of constant walking and NHF-ing (as I call it). The players that gathered consisted of some returning faces from the 1st pickup game in March. Others had heard about the talk of a game being put together and showed up that morning. Others were there simply to show support and come along for the ride. We traveled about 25 minutes to the courts we had reserved for the event. As we pulled up, we discovered that the recreational center that we were using was also a sponsored Orlando Magic practice facility. We broke up into teams, handed out our event jerseys and hit the courts. I had hoped that the guys that attended the event would have fun, but I had not anticipated the connections that these guys were going to make with each other. We were all from different parts of the country: the states of Illinois, New York, Pennsylvania, Tennessee, New Mexico, and Wisconsin were among those represented in the group. The guys bonded with each other on and off the court that day. They showed great sportsmanship and camaraderie amongst the group. Some guys were nice enough to take video and photos of the day's event. Before we headed back to the hotel, the group all signed the “game ball” for the 2012 ShootUp event as a memento for use at future ShootUp events.

Looking back, I can honestly say that it took a group of people that were really committed to this event for it to have the success that it did. New ties were formed and old ties were reinforced. And my whole mission – to encourage physical activity amongst our community – was established. My sincere thanks goes to all of those who helped organize this event and to all those who came out and supported our little dream.

Social Infusion at #NHF2012

Social Infusion is "where online friends become offline friends." Hundreds of people in the bleeding disorders community interact with one another online through Twitter, Facebook, Instagram, Google+ and more, but many have never met face-to-face. With the National Hemophilia Foundation's 2012 Annual Meeting (aka #NHF2012) drawing thousands of community members to Orlando, this was a great opportunity for those "online friends" to get together and take those online friendships offline.

The Irish are renowned for knowing how to throw a party, so this year's venue was Raglan Road Irish Pub, located in the Pleasure Island section of Downtown Disney at the Walt Disney World® resort, just 4 miles from the Orlando World Center Marriott (where the conference was held). The pub, owned and operated by an Irish company, was built entirely in Ireland, then shipped to Orlando. They provided great food, beers and spirits, plus live entertainment featuring Irish-born musicians and dancers. We provided some of the hemophilia community’s most influential social media users and (thanks to our generous sponsors) free drinks, and swag bags that included a shot glass, sunglasses, a clip-on cell phone case, a stylus pen and more. We hosted approximately 100 people, including consumers, NHF staff, HFA board members, pharmacy owners, mobile health developers, pharma marketers and the producers of Stop the Bleeding! A comedic web series.

The event started out a bit crazy. We were supposed to get in the room at 8:30 pm to set up, but that didn't happen, so at 9 pm there was a rush to set up the registration table and distribute lanyards & swag bags to attendees who were waiting. Thankfully, several people offered to help and we got everyone settled in quickly. I was impressed to see many of the NHF staff/employees in the room. I know how busy they were and how hard they had been working to make #NHF2012 great. I appreciate their support when they could have been catching up on much-needed sleep.

Like any good party, it seemed to get more wild and fun as the night went on. Everyone transitioned from sitting and having friendly conversations to chasing down new friends to pose for photos modeling the fashionable eyewear provided by My Blood Brothers in the swag bags. Other items included: MicroHealth t-shirts, Social Infusion shot glasses, Accurate Rx stylus pens and Hemophilia Scholarships phone cases.

Overall, I think everyone had a great time. This event is not meant to educate or entertain people. It's simply an opportunity to come out to a social setting, meet and mingle with hemo friends from all over the U.S. and to leave with a deeper connection to the community and its members.

Please take a moment to thank our sponsors who generously support the online hemophilia community and made Social Infusion possible this year, by connecting with them online for more great content, including more photos from Social Infusion (hint: posting this week).

Spark Showcases Passion in the Hemophilia Community

Contrary to most bleeding disorder community events, Spark engages the community in an exciting and entertaining display of passion and talent among 10 speakers. Spark Chicago (2011) wasn't a fluke. I, and many others, saw a need in our community: the need for a new event. Something that could reach the adult bleeders, grab them by the shoulders and shake the shit out of them. So with that in mind, who did we decide to host this thing? Hemophilia heartthrob and creator/star of Stop The Bleeding!, Patrick James Lynch, of course.

Similar to TED talks, Spark features a handful of speakers that give 5-minute talks on a subject of their choice (How to Start a Cult, Building Your First Website, The Importance of Fatherhood, History of Hip Hop, Dating Tips... to name a few). We encourage everyone to speak their mind and be themselves. This event IS NOT about us as hemophiliacs, it's about us as people... people that have a wide range of different skills, abilities and interests. Spark is built to showcase the features of an individual's life beyond hemophilia. So far, Spark has been embraced by both those who attend and those who participate. Community leaders Lee Hall and Aaron Craig have both given passionate talks about their involvement within the realm of hemophilia and this year was no different.



Other highlights from Spark Orlando:

Liam O'Neal gave us 10 quick "Snapple Facts" about his life. He talked about his time with the Navy, gave us a simple magic trick to try at the bar, and his thoughts on the song Call Me Maybe. Needless to say, we all learned a lot in five minutes.

Luke Saulsberry inspired us to do better by enlightening us with his "top achievements" thus far. Luke is a husband and new father. His achievements might be a little different than most of ours, but they are achievements nonetheless. For starters, his legs were immortalized in stone for an art project back in college, he hasn't bled to death yet, he graduated college, and he hasn't accidentally killed his child…yet... something he was way too proud to talk about.

Ryan Gielen is the producer of the upcoming comedic hemophilia web series Stop The Bleeding!. Ryan came all the way from L.A. to be with us at Spark and we were super stoked to have him. He told us about his life as a filmmaker and the success that he has had so far in his career. He teamed up with hemophilia heartthrob Patrick James Lynch a few years ago. Since then they have turned Stop The Bleeding! into a full-on web series they will be launching in January 2013.

Interested in speaking at our next Spark event? Contact me for more information and tips on how to give the best talk of your life! Seriously, Spark is super-laid-back and informal, but we plan quite a bit ahead of time to make it look easy. All speakers are given an easy-to-edit PowerPoint template and help on finding content or developing an idea to talk about. Join us at the next Spark event for more great talks, laughs, drinks, and fun.

For more information and awesome content, check out http://facebook.com/SparkEvent.

Winter is Coming, Invasion of the Nosebleeds

Most people use animals, plants or stiff joints (which is hard for some bleeders since some joints are always stiff like my ankle) to tell when winter has arrived. I've never had a problem figuring out when winter has arrived because the cold air wreaks havoc on my nose. My nosebleeds pretty much start out of nowhere. There will be one day when the weather is slightly chilly and then the flood gates open. Sometimes it looks like I am trying to donate blood but forgot the bag to put it in, so I panic and just spread it around the bathroom. I've come to experience nosebleeds as another experience that my hemophilia has provided that isn't really terrible, just terribly annoying. Most often, these nosebleeds have a way of ruining plans and occurring at the most inopportune time or place. My wife has become accustom if I am in the bathroom for a long time, I have found something good to read or play on my phone or I have a nosebleed. Not to fear though, my experience should hopefully benefit other bleeders of the nose.

I must first say, I am not a medical expert and I am not trying to be one.  If your doctor disagrees with anything that I say, then I lose and you need to follow their advice.

So, after my experiences with nosebleeds, I am going to give you my top five tips for stopping/preventing nosebleeds. Keep in mind this is not something I think about all of the time, nor do I have a book planned, but something I simply thought might help out a fellow bleeder. I am old school when it comes to nosebleeds. I hardly ever use a napkin or towel to stop them and usually lick the blood off my fingers when finished instead of washing in a sink. I use my shirt for my nose and face because I crave the attention. Once again, this is not medical advice and I strongly encourage to talk with you doctor.

Tip #5

No Gold Digging - This might come as a surprise but you really shouldn't pick your nose. This is true for social reasons, but also for nosebleeds. I am even talking about the casual swipe with your hand because your nose itches. You should really treat your nose like the Bubonic Plague and barely even use it to breathe. This is especially true when you can tell it is stuffy and you just have the need to get that gold out since the price is so high. Leaving it alone can be annoying, but it is the best method as my nosebleeds happen because of a slight bump or brush.

Tip #4

Patience is a Virtue - This is a cliché, but it is true in more ways than you think. I am talking about when you actually have a nosebleed obviously, but also in other areas. When I have a nosebleed, it sometimes lasts awhile so I like to do a drip test. I pull off the pressure and see how long it takes for a drop of blood to hit the floor, toilet or my wife's shoe. You can aim for whatever is most appropriate at the time. This isn't scientific, as I already know that an object falls at 32.18 f/s faster each second until reaching its terminal velocity, which depends on its wind resistance. My drip test isn't as technical. I estimate how long it takes the blood drop to reach the end of my nose. If the blood comes quickly, I know it will be awhile and I just apply pressure. This way I am not disturbing the forming blood clot. You also need patience when you wake up in the morning. My nose is stuffed up in the morning and I have a very strong urge to blow my nose to clear it up. However, I know that if I wait awhile then my movement will clear up my nose a little bit so that I can blow it and not bleed everywhere.

Tip #3

Blow it Up - I think one of the most important things needed for a nosebleed to stop is a good clot. You may think I am crazy, but when you have had as many nosebleeds as I have, you know when there is a good clot forming. I also know when a good clot isn't forming and holding my nose won't do anything but just prolong my agony. Sometimes you can have a good clot but it just won't fully form. I have two techniques that I use. The first seems counter-intuitive but it works. If I feel like I don't have a good clot, I start over. I blow my nose and clear out whatever is in the there and start all over. It gives the clot a good clean surface to latch onto (like a leech). Keep in mind I don't do this every time, just when I feel the clot isn't working. The other technique is, when I know the clot is good but for some reason when I apply pressure it doesn't do anything, I will sometimes release pressure and see if the nose will stop, because sometimes I just need more blood in the nose to form a clot. This sounds weird but it works for me. I will release the pressure and just let my nose drip and then apply pressure. I have even just let it drip and it stops with out pressure. These are pretty rare instances, but sometimes I just try something until it works.

Tip #2

Keep it Hydrated - The main reason the nose bleeds during the winter in my experience is because of basic  science. Warm air holds more moisture than cold air, so the cold air has less moisture and dries out my nose. I don't know what is best, but you need to prevent your nose from drying out, as that will help prevent nose bleeds. I have heard of many different things that work, but I will let you find out what works best for you. Humidifiers, warm showers, Vaseline in the nose and breathing in steam from coffee or tea are some of the things I have heard. I don't really know what works best because I haven't tried all of these. I just know that when my nose is moist then I usually don't have to worry about having a nose bleed. I would suggest finding some different things and trying them out. I am a practical sort of guy, so I try it out and compare it to other techniques until I find something.

Tip #1

Don't Lean Back, Lean Forward - Everybody says this and everybody is right. The only way you are going to get it stop it is to not lean back, but to lean forward. It also helps to be calm when you are leaning forward. Sometimes, if a nose bleed is lasting awhile, I start to freak out, which gets my heart rate going. This may not actually matter, but if I get a nose bleed while exercising I have to take a break and let my heartbeat return to normal. I usually do this by sitting down, if I can, or squatting. So it isn't always just about leaning forward, but how and when you lean forward. The other thing I do when I lean forward is breathe through my mouth at a slow space to help slow down and get myself under control. Like I said this may not even be accurate but it seems to help me when I lean forward.

There you go peeps. That's the list I got for you. It's not mind blowing, but hopefully helpful. For the last time, I am not a medical expert and you shouldn't take this as medical advice, but just me talking from experience. Let me know what you do that helps, as I know I didn't share some of the more popular things like ice cubes on the nose, infusing (which I heard doesn't really help because factor is for bleeds that take a while to stop) or that stuff that you can put in your nose which I don't know the name because I never use it.

I hope this winter isn't too harsh and that your bathroom doesn't look like mine probably will. I always have to tell people I haven't hidden a body somewhere even though looking at my bathroom it sometimes appears as if I have.

Announcing Social Infusion at #NHF2012

Last year, when planning my trip to Chicago for the National Hemophilia Foundation's Annual Meeting, I found myself trying to set up meetings with several of my online friends in the community. Soon I became overwhelmed trying to coordinate schedules with multiple people and I thought, "Why is this such a hassle? NHF should host a meet-and-greet to kick-off the conference." I asked NHF about that and they liked the idea, but didn't seem ready to take charge of such an event. So, with very little time to organize it, I decided to plan an event anyway. 

Last year, I hosted the first Social Infusion at English Pub in Chicago. They donated a great space for the event, Accurate Rx sponsored to provide lanyards and name badges, and we hosted approximately 50 attendees, including consumers, NHF chapter staff, HFA board members, pharmacy owners, mobile health developers, pharma marketers and the managing editor of HemAware magazine. It was a lot of fun and I received great feedback, including several requests to host the event at future conferences.

This year, I had more time to plan and find sponsors, so it's going to be incredible. I expect to host approximately 100 people at the event in Orlando, as well as hundreds more across the globe as part of a virtual audience connected through social media. The event is free and the first 100 guests to arrive at the venue will receive a Swag Bag. Learn more and register at socialinfusion.eventbrite.com. I hope to see you all there.

Be sure to Like MicroHealth and Affinity Biotech on Facebook for the latest news and information about Social Infusion. Join the conversation on Twitter and Instagram with the official hashtag: #socialinfusion. 

What if we actually went camping with a bunch of bleeders?

I never needed toys while growing up. My playground was the great outdoors and my imagination was better than anything my mom or dad could have bought me. I will admit that, most often, my imagination caused many painful memories because most of my ideas were dangerous, stupid or illegal. For some reason the police frown upon kids dropping water balloons from 20 feet in the air onto cars as they pass under trees. Who knew?

My imagination is what my brother and I used to pass days upon days during the summer. We would even use it to stay up way past our bedtimes trying to fool our parents into thinking that we were asleep. You can ask my mother. I designed a system to turn my light switch on/off from my bed using paper clips, fishing line and the random assorted tools and gadgets my dad had left in his toolbox. Maybe I was just a weird kid, but thinking about my childhood brings me to one of my biggest concerns. What is my son going to do to entertain himself?

My son does not have a bleeding disorder like I do, which may be good or bad. Time will tell. However, I think one of my greatest excitements is going to bleeder camp. I am old school. I love going outside, working on things and finding ways to entertain myself still. However, I like my fair share of shooting noobs in the face and tea-bagging opponents who need to be taught a lesson.

For me, bleeder camp was the event of the year (excluding the Fourth of July). I loved building and strengthening relationships with individuals who also had some of the same difficulties I had growing up. I loved all of the activities I was able to do because most of it was new for me. I even loved education and learning about bleeding disorders and random facts that no one else cares about.

So unfortunately, my son won't have a wonderful opportunity to experience the great outdoors through bleeder camp. I emphasize great outdoors because bleeder camp is barely a venture into the outdoors. There are trails to follow (usually gravel) and there is a return to the wonderful invention of air conditioning when it's time to sleep. Realistically, it is more of a conference than a camp, but I think that can be changed.

What if we actually went camping with a bunch of bleeders? I am not saying that the current format of camp is not valuable, nor am I saying it is wrong. I am just wondering, what if we switched it up a bit? It does not have to be for an entire week. God knows someone would probably die if it was that long. What about a couple days, one night in the peaceful serenity of a place where cell phones do not work and the only way to see is from the light of a campfire? The kids would have to set up their own tent, cook their own food and dig their own toilet. I know this sounds a lot like boy scouts. Maybe I am just jealous because I quit during cub scouts since I was not able to play with fire soon enough. Who knows? But I think we need to spice camp up a bit.

My first camp was in 1992 when I was eight years old. I have been to approximately 20 bleeder camps (in different locations) since I started. At about six of those camps I was a counselor or counselor-in-training, so I know a bit about camps. My solution is to let us go camping. I think that most of the camps prohibit electronics anyway, but friendships are made from experiences. Sometimes you can become really good friends just by talking with someone or conversing, but in my experience, my best friendships, especially in the bleeder community, have been built because of the different experiences I have had with the individuals. I can not go into much detail, but the reason I love camp is because of the experiences I had with my fellow campers. Most of the experiences were not scheduled by the director but something our counselor let us do because he understood the purpose of camp.

Let me correct myself. I do not think we need to necessarily go camping like Davy Crockett, but I think we need to create opportunity for friendship-making experiences. How often do kids with bleeding disorders get to hang out with other bleeders? I lived two and a half hours away from the closest bleeder when I was growing up. So I cherished the time I had when we were able to make it to an event put on by the hemophilia chapter. I may be completely wrong and there may not be a need to make opportunities that are different than what we currently offer. However, I may be right... so think about it, mull it over in your noggin before you just dismiss it. My son will not be able to attend bleeder camp like I can, so it is already a special camp for rare individuals. I want to make it the best camp for the best individuals and I think changing it might not be a bad idea.

National meetings make for a great vacation!

A little less than three months ago I was in Santa Clara, California, for the Hemophilia Federation of America's (HFA) annual symposium. What's a symposium you might ask? You could think of it as a big conference where people from all over the bleeding disorder community come together to talk about important issues and topics. You could also describe this yearly event as an all-out fun fest where you get to meet new friends and hang out with old ones on the streets of a new city.

I like to think of the symposium as a mixture of both. Although I think it's very important to go to as many sessions as possible and participate in the discussion about how we can all be better advocates for our community; my main goal is to meet newcomers and show them just how fun a weekend with bleeders can be. 

Time for a math problem:

Former Miss Rhode Island + up-and-coming comedian + basketball game + information on new longer-lasting products + choreographed dancing = one hell of a weekend.

Join us at the next national meeting in Orlando, Florida, with the National Hemophilia Foundation. Register now!

Ball So Hard(ly)

It was about 18 degrees outside as I sat in my hotel room in Erie, Pennsylvania, this past February. My friend Jay and I were having our morning coffee as we sat watching our daily dose of Sportscenter© on ESPN before we were to hit the road back to Pittsburgh. Highlights from the NBA games the night before were topped off with plays made by New York Knick Jeremy Lin. His quick rise to fame from a humble beginning stemmed from a plethora of injuries affecting the Knickerbocker roster. Both Jay and I share a common interest in basketball. We joked about how great it was to see a young kid making such big waves in the league and was very inspiring to the rest of us who always dreamt of having such an impact on a game. We then realized that instead of going to the nearest walk-on tryouts for the NBA, we really just wanted to play a game of pickup basketball.

Jay saw the upcoming HFA Symposium in Santa, Clara, California, as a perfect opportunity to get a group of guys together to play a morning pickup game on the last day we were all going to be in town. Doing this during one of our largest gatherings of the year gives a chance for like-minded guys, that may or may not have opportunities to play a fun, yet competitive game of basketball, get a chance to just wake up, do their prophylaxis treatment of factor [if needed], and go play ball. Not only would I be enjoying a favorite past time with some of my closest (and some of my newest) friends, I would be encouraging them to live their life in spite of our similarity that is hemophilia. Jay suggested I contact everyone I know that was planning on attending the event. I did some research to locate a few courts nearby. 

When we got to Santa Clara, I made sure to get the word out that people were going to meet up early Saturday morning (after the first two days of socializing, but before the last day of Symposium events) and play a couple small games. Knowing how news amongst this community spreads like wildfire, I was certain basketball games would be happening in our near future. The HFA Symposium went so well, as I had anticipated, I reunited with plenty of friends and families I have been fortunate to have met at previous meetings. 

When Saturday morning came along, I woke up early to assure myself that the weather was going to cooperate with us so we could play at the outdoor court just outside of our hotel. Unfortunately the west coast sky decided our 7:45 am start time would be the perfect time to start a nice steady rain to clean up the apparent mark the Symposium had left on the fine city of Santa Clara. Needless to say, the outdoor court was out of the picture, for fear of slipping, falling, several bleeds, and plausible liabilities that I wasn’t prepared to be held responsible for. I had already secured a backup indoor court less than 2 miles from the hotel. 

When I went to the lobby to see a gathering of 15 groggy-eyed, yet optimistic, wanna-be D-Wades and Durants ready to play ball, I knew it would turn out great.  Three full cars of people rolled up to the indoor soccer/basketball facility around 8:00 am. Several different guys with different levels of skill came out and it made for a great time. There were new bonds being made between all of us, lots of fun, and a small handful of ankle and knee bleeds requiring follow-up treatments and bed rest. Afterwards, we got together for a group picture and I remember thinking to myself that all of this happened because my buddy and I just wanted to play some ball. But to me, this was more than just a pick-up game. This was getting together with people I hope to know my entire life… and in my opinion, everyone that came won. 

Conquering the Lava Swim

One night this winter, over dinner, my older brother Pat had mentioned a competitive open-water swim that would take place in May, called the Lava Swim. It was 1.2 miles in the Barnegat Bay. I had been expressing interest in getting back in shape for months but kept finding convenient ways to avoid it. I planned to go back to something that I had always loved… getting back in the pool. I swam competitively when I was younger and I knew this is what could get me back on track cause it had worked for me before. I now had a goal and started acting on it.

In January, I started training at a local pool. I started out swimming 40-50 laps every other day. It wasn't easy at first and it was obvious that I had let myself get out of shape. I took the pain that came along with it as a sign that I was making progress. It got easier with time and eventually I built up to swimming 80-100 laps by May, as the race was approaching. I felt good, but was still anxious. Swimming in that open water would bring currents and would be a lot different from swimming in a pool.

I went through an open-water swim training course a couple weeks before the race and got in the cold water with a full wetsuit. It felt a lot different, but I was still feeling confident. I had to be confident because race day was only two weeks away.

On the morning of May 27th, at 4 am, I woke up to a crazy thunderstorm with pouring rain outside my home. The race was only three hours away and I had to travel east to the New Jersey shore. The storm was traveling in the same direction. I planned to meet my brother and his wife, Adrienne, there. They were taking the plunge with me. My older brother is not affected by hemophilia and he has recently become a rockstar at triathlons. He was a big supporter in helping me train and I’ve always looked up to him. 

There were tons of people at the beach when I showed up and the rain had slowed, with no thunder or lightning in sight. I got ready and got into the water with 150 other people for the start of the race. My heart was pounding and I knew the first couple minutes would be crazy in this large pack of people swimming. I got to the first buoy and was getting gassed about halfway through, but I just kept pushing like I never had before. It felt like the race was never-ending but I knew I wasn't in last place, as there was always someone behind me. I struggled running up the shore and I felt an exhaustion as if I had really given every last bit I had. I heard someone mention the time at right around 31 minutes. I ended up placing 47th out of 150 with a time of 31:00.8.

I lost 25 pounds and gained back range-of-motion in almost every joint, including my elbow. I also noticed that I was no longer having the inconvenience of spontaneous bleeds that I had experienced in the past. Although the race was a great accomplishment, it is just a start for me. I'm going to continue swimming and start running and biking, as well. I plan to complete a triathlon this year. Who knows? Maybe I'll even write about it. 

This Is Why We Walk

It started in a hospital postpartum room. My brand new son was getting routine tests done and couldn't stop bleeding after a heel prick. It seemed surreal at the time that something could be wrong with this perfect looking creature. My husband and I waited and waited for doctors and nurses to tell us something, anything. After what seemed like hours, they sat down and told us they suspected hemophilia. All I knew about hemophilia was it meant trouble with blood clotting and Ryan White. Hemophilia. Where Google told us that our perfect new child could live a normal life. Hemophilia. Where I would have to infuse my child with medication in order to keep his body normal. Hemophilia. Which indicated extra doctors visits, modifications on the playground, and the possibility of death for no reason other than that his body just couldn't produce something mine could.

Hemophilia.

We were scared. We were unsure how this would affect our lives. We were afraid of how it would change the way that we parent, the way that we look at our son, or the way that we treat him. And then I got mad. I got mad at everyone and no one. I didn't want this for my child. I didn't want to deal with this. I didn't want to be scared all the time. I didn't want to feel out of control.

And that's when I met the director of the Hemophilia Foundation that serves our area. A friendly woman who welcomed me into the community with open arms. A woman that understood that I wanted to do something about this and not pout in a corner waiting for others to feel sorry for us. A woman that has extended herself far beyond her job description and become a friend. The foundation was planning their first ever walk and asked me if I would be interested in helping. I gladly accepted, though I was completely unsure of my role as this was something they were just figuring out themselves.

Now, almost five years later, we just finished planning our fifth annual Spring Walk for Bleeding Disorders and it keeps getting better every year. From the planning perspective, I serve on a committee that is tasked with getting pharmaceutical companies in the community to donate money, to get local businesses to donate services, and to get people in the community to attend.

From a personal level, I task myself with raising as much money as I can for the foundation. This year I set my goal at $5,000. It was the biggest amount of money I have ever tried to raise and we surpassed it by $1,320. We raise this money to show our support to family, friends and community members of our commitment to the hemophilia community in honor of our youngest son, Evan.  His insistence on leading the same life that every other friend of his lives is inspiring to us, and we feel that his attitude about his hemophilia is so motivating that we want to do whatever we can to shine a light on what makes him special.

Being involved in planning and participating in the walks has been great for our family. It helps us to feel like we are helping to make a difference in the community by not only raising money, but by shining a light on a cause that is important to us. I have taught so many friends, both close and extended, about hemophilia just by trying to raise money every year. We have also gotten my husband's employer involved, and every year they donate money as part of their own community involvement. And this year they matched dollar for dollar what every one of their employees donated to our walk. It was unbelievable.

On the day of the walk, I felt a lot of happiness and satisfaction for all of the hard work that we put in to planning this event. There were about 350 people there to walk around the park in their blue shirts to show their support for the bleeding disorders community. And when the walk was finished, there was face painting for the kids. There was also a local photographer that set up a photo booth to take pictures. There were donations from Chick-Fil-A for lunch and there was a sundae station for people to enjoy a cool treat in the hot and humid May weather in Florida.

I would definitely classify the walk a success for the foundation. This year had the most people in attendance and the most involvement from the local community. But for me, this was the most successful because I stood watching all of these wonderful people that are just like me...just like my son. And I reflected back on that day in the hospital and the fear I felt over that word...hemophilia. And it didn't scare me anymore. It didn't intimidate me or make me want to run away. I felt in control...that we are living the life we had always thought we would, and hemophilia is just a little hurdle we have to jump over every now and again.

World Hemophilia Day

Every year on April 17, World Hemophilia Day is celebrated around the world in order
to increase awareness of hemophilia and other inherited bleeding disorders. World Hemophilia Day was established in 1989 by the World Federation of Hemophilia (WFH) in honor of the organization's founder Frank Schnabel, who was born on that day.

This date is especially important in my family. Amber and I have four children with hemophilia, including our youngest, Elise Mae, who was born on April 17, 2008. It is our hope that the global community will develop a cure by the time she has children. Until then, help us spread the message to “Close the Gap” of care around the world. Together, we can work towards a day when treatment will be available for all globally.

Source: World Federation of Hemophilia

Behind the scenes: 22 years of studying Hemophilia

Hi... I am Mahalingam.P.R, a self-declared geek from God's Own Country - Kerala, India. Living with severe Hemophilia A, my life has been anything but ordinary. Now 22 years old, I am getting my Master's degree in technology. Frequent bleeds have always concerned me, but the "Indian" model has made me stronger, and able to face everything thrown at me.

Born in a middle-class family, affordability of anti-hemophilic factor (AHF) was not the primary concern (even if many are not so lucky). My parents were more concerned about the bleeds itself, rather than the treatment. When we explored prophylaxis, it turned out to be too expensive. To add to that, AHF isn't supplied free of cost in Kerala. So, it has to be an on-demand treatment. Also, fear of drugs have stopped the doctors from suggesting self-infusions.

So, a part of my life has been spent moving to and from the hospital. Even if I don't prefer infusions, it becomes a necessity sometimes, and I often feel bad seeing my dad shell out his hard-earned money on meds. He tried to hide the expense as much as possible, but I managed to "uncover" it. Now I make it a point not to push for infusions.

The Indian model of bleed management stresses RICE, with the largest possible "I". Only if ice packing fails do we go for infusions. And even if we are forced to infuse, we limit the volume as much as possible. When I look back at my life till now, I have got almost all kinds of bleeds (kind of an "experience"). But all these have been the foundation stones on which I have built my life.

Having grown up in a protective shell, moving beyond those limits has always been hard for me. But the foundation stones have held up, and they have given me quite an idea of what I can do, and what I can't. I stopped all kinds of outdoor games and restricted myself to indoor recreation and reading. These restrictions have played a major role in shaping my career. As a matter of fact, I would attribute all successes in my career to Hemophilia. All the "sit and study" routine has helped me develop my knowledge and application skills, ultimately improving my results to a huge degree (scoring 99.5 percentile in the assessment test to enroll for the Master's course has been one of my peak performances so far).

Encountering all the issues thrown at me by my condition has made me strong enough to handle most issues in my life. All my workload during the Master's course has been managed well, with time to spare. I have been able to balance my work and play in a 90-10 ratio (thats the best possible) with little effect on my life. I write my life experiences in detail on my blog so that others can get a feel of what I am going through and can walk a mile in my shoes.

That's when I realize... what would my life have been like if I was as normal as anyone else? Heading the Youth Group of Hemophilia Society Cochin Chapter, I am trying to get the message loud and clear: YOUR LIFE IS IN YOUR HANDS... YOU ARE THE ONE RESPONSIBLE TO MAKE IT THE BEST POSSIBLE... and it is the support you get from the people around you that really matters.

The story behind STOP THE BLEEDING!

Pacing in my bedroom practicing rally speeches before my beleaguered team took the court for the second half against Heavy Favorites, it never crept into my mind that I would one day share NYC stages with Broadway legends or play poker internationally against some of the most successful players to have ever lived.

Then again, I was twelve & speaking to a mirror. What did I know?

Life has been funny that way. Always intense, always "all-in," yet somehow ever-changing.

Such was the case again last April when online poker was banned from the U.S. I'd given up the actor life to pursue this lucrative, competitive & mentally-perplexing game. It invigorated me & satisfied the athletic competitor born into a hemophiliac's body. And once given platforms to blog about my poker experiences, the artistic instincts in me were satisfied as well.

Life was good. And then it changed. Now what?

I spent most of last summer transitioning out of that life and into a more...let's call it "scheduled" existence. But I didn't have a clue big-picture wise. Poker was taken away. The acting life I'd left behind. Basketball coaching was no longer realistic. All I seemed to have were vacancies.

Then around August of last year, I began spitballing creative ideas to industry professionals of the BD community (does anyone abbreviate "bleeding disorders" this way? 'Cuz I'm thinking we could use some abbreviations here & there and "hemo" is the best we got thus far. Let's get on this people!). There was interest, but not involvement. Something creatives run into a lot of is enthusiastic passiveness; people that express interest & may even believe in a project's value, but aren't ultimately intending to assist in it's production. A frustrating obstacle in collaborative endeavors, but one that's unfortunately common and perhaps even necessary.

All right, nice try. I figured that was that. Another dart thrown against a metal board. But there was one project I'd proposed that I just couldn't shake. But I couldn't possibly develop this all by myself. Where would I get my team? How could I generate a platform? Where the #$@& are we gonna find funding!? Despite all this, STOP THE BLEEDING! adhered to me the way certain ideas do from time-to-time; these outlandish undertakings that strike something so deeply in me that my brain basically goes, "Well this might be a complete disaster, but what the hell!?"

You get the idea.

So when STOP THE BLEEDING! refused to leave my consciousness, I sat myself down and asked why. I'd come up with it because I want to merge my backgrounds - an actor with severe hemophilia. And honestly, I was desperate for something to do! I needed to spark a new passionate pursuit. This option seemed viable, but it had failed to attract investment which made me doubt it's worth. Time to pick up and go again. But the damn thing wouldn't let me get on with it. Why?

Eventually, it hit me. Because "this damn thing" is actually quite important. In a self-absorbed drive to find my next path, I neglected to register just how meaningful something like this could be. Now on one level, I was aware of it. It was the absence of humor & entertainment in the BD community (yeah, I'm going for it, BDers!) that sparked the idea: I can fill in this blank! But my laser-focus on creating proposals & getting a financial backer had been so sharp that I didn't stop to think about just how great an impact STOP THE BLEEDING! could have. In a market (if you will) glutted by heartfelt & informative but often redundant content, there was a severe lack in entertainment. In fun. In laughing. In remembering life's a silly way to live, bleeds and all! This project could do that. And in this digitally mad time, maybe it could help centralize people that would otherwise prefer the perimeters. Maybe it could give BDers an image of themselves that didn't involve more needles & bruises with stringed instruments playing in the background. Maybe it could engage guys like my late brother & lead to their making smarter decisions about their healthcare. Then again, maybe not, but hey, I've had egg on my face before. It washes off.

And so, now we sit with the April 8th fundraising deadline rapidly approaching. We're still $8,000 away from our modest (yes, believe it or not, modest) goal. I'd be lying to say I'm not nervous about reaching our mark. But to quote Ambrose Redmoon, I believe that "courage is not the absence of fear but rather the judgement that something else is more important than fear," and that failure is a necessary companion in the life of a successful person. So if I fail, I fail. But until then, I'll carry the flag and wave it high for a project I believe deserves attention, even if a little egg drips onto my shirt in the meantime.

What I Know About Hemophilia: A 7-year-old's perspective

Hi! My name is Brandston and I have severe hemophilia A. I also have an inhibitor (an antibody to the meds). I hate having an inhibitor because I have to get more meds. My brother (who doesn't have an inhibitor) gets to infuse every other day, but I have to get infusions everyday and if I have a bleed, I get infused several times a day. When I get bleeds they take a long time to get better because the meds don't work very well, but if my brother gets a bleed it doesn't take as long to get better.

My mom and our nurses taught me how to mix meds and infuse myself. It looked easy, but it was not. It was a lot of listening and learning. I would like to learn everything there is to know about hemophilia.

My earliest memory of having hemophilia is last year when I had surgery to get my new port put in at Cardinal Glennon Children's Hospital in St. Louis. To make me fall asleep, they put some stuff that smelled good in containers and I got to pick one. I picked Root Beer. Then I blacked out. I didn't feel anything at all. That was my fourth port and it's as far back as I can remember. I forgot about my other surgeries because they were a long time ago.

I didn't really know what hemophilia was when I was little. I used to think the nurses were playing a joke on me. Now I understand that it is a bleeding disorder. When I was little, I felt bad about having it... not just for me, but for everyone else that has hemophilia, too. Hemophilia has a lot of pain. It might look like it doesn't hurt, but it does. Getting poked with a needle also hurts and I need to get poked to get my meds. Nothing has changed how I feel about hemophilia, because it still hurts to get my meds.

I hate infusing at home on school days because I have to wake up early and get my meds before school. It used to take about two hours, but now it only takes about 45 minutes. I still hate it though. Having hemophilia is not all bad. I love all the camps that I go to, like Camp Notaclotamongus (Missouri), Camp Wilderness (Missouri) and Camp Victory Junction (North Carolina). I love hemophilia camps because they are the only time I get to play rough (running, jumping...).

Having hemophilia makes me feel different from other kids because I don't get to do all the things that they do and I get bleeds often. I think there will be a cure, but not for a long time. If someone didn't know about hemophilia, I would tell them it is a bleeding disorder that I have and I get bleeds a lot and have to infuse everyday. I don't really care if my life stinks having hemophilia, but I don't want babies or other kids to have to get poked with needles.

How Hemophilia Has Shaped Who I Am: A 10-year-old's perspective

Hi! My name is Dillinger. I have severe hemophilia A. I have to get infused in the arm every other day. My earliest memory of having hemophilia was when I was three or four years old and I got my port put in at Children's Mercy in Kansas City. A port is something that doctors put in your chest or stomach that connects to your heart so that you can get poked in the port with meds that will help your blood to clot. Even though I lived in Wichita, Kansas, I had to go to an HTC a few hours away because neither Wichita nor anywhere else close by had a Hemophilia Treatment Center.

Around the time before I got my port put in, I did not know what hemophilia was or how I got it. When I was little, I barely cared or noticed it. I just thought it was a sickness I had to take care of for awhile. Why? I have no idea. I was really curious though. That's what got me thinking I want to become a doctor when I grow up. That's all I remember. Now I know hemophilia is a blood disorder in which my body does not clot, so I need my meds. My mom is the one who taught me everything I needed to know about hemophilia.

My mom (and camp) taught me how to mix my meds and infuse. Now I infuse, by myself, in my arm every other day. If I get a bleed I might have to infuse extra doses to heal, but I do not get bleeds very often because now that I'm older I have learned to settle down and do stuff that will not hurt me very much. Getting bleeds is sort of unexplainable because they feel different every time.

When I was a kid, I didn't care for hemophilia, but I didn't really pay attention to it. My feelings have changed a lot from when I was a kid to now. Now I feel embarrassed about having hemophilia, because sometimes I have to go to school on crutches or I get bloody noses and everyone stares at me. When I get hurt, I have to go straight to the nurse's office (unlike other kids) and I get hurt more easily and more often. It makes me feel different.

What I like about hemophilia is going to camp because I can do things I usually cannot do, like be real active and play sports without getting hurt because lots of people are watching and can take care of me if I get hurt.What I do not like about hemophilia is getting up early every other morning on weekdays to get an infusion before school. It's very boring and I wish I could sleep more.

I think doctors will hopefully find a cure sometime in maybe 5-20 years because it may be soon or it may be longer. I don't have the direct time, but I'm pretty sure it should be between those years.

Having hemophilia makes me feel different from other kids at school and in my neighborhood for many reasons. I cannot play rough (run, jump, play games like football...). I have to infuse myself every other day. I could get hurt easily. I could probably name them all day, but see, that doesn't matter to me. I have an awesome life and I don't ever want to ruin that. Hemophilia has played a large role in shaping who I am today and I wouldn't want who I am to be any different. But I would be honored if anyone helped find the cure.

Roller Coaster

The word roller coaster can be used to describe an amusement park ride with tight turns, steep slopes and high speeds. That word can also be used figuratively to describe something that goes through wild and unpredictable changes. I think the word roller coaster fittingly describes how my life has been living with hemophilia.

I was born on November 28, 1968, the youngest of four children: three boys and one girl. My maternal grandfather had hemophilia. My oldest brother, who was nearly 16 when I was born, was born with Hemophilia A. My other older brother was not. I have two male cousins who weren’t born with hemophilia and one male cousin that was born with it. Given the family history, the doctors knew to test me immediately at birth and sure enough I was also born with hemophilia.

Back in the late 1960s and through the 1970s, the common treatment was to receive Factor VIII or Cryoprecipitate transfusions, which were derived from human-donated blood. My older brother received Factor VIII and my doctors chose to give me Cryoprecipitate.

My family lived in rural Fauquier County, Virginia, about 70 miles west of Washington, DC. Our very small community hospital was not prepared for treating a hemophiliac, so I had to go to Georgetown University Medical Center each time I had a bleeding episode.

I’m very lucky to have grown up on a 56-acre horse farm. My mom was a pro at handling hemophilia related issues, as she’d gone through all of that for 15 years with my older brother. My parents pretty much let me go and do things on our farm, like riding my bike or horses sometimes. Inevitably, I would fall and get a bleed or get bleeds for no reason. Each time I had a bleed, my mom would get everything ready and we’d get in the car for the long haul to DC. It would end up taking several hours to get there with all of the rush hour traffic. They had to thaw out the frozen Cryoprecipitate and wouldn't start doing that until we arrived.

As if this all weren't enough, when I was about four I had a reaction to the Cryoprecipitate and broke out in a severe rash and hives and had trouble breathing. From then on, I was given a large dose of Benadryl, which would completely knock me out. We’d have to wait hours for them to do this, then it would be another few hours to infuse it, then another few hours drive home. I couldn’t begin to tell you the hundreds and hundreds of times we did that while I was growing up.

As I got into my teens, my bleeding problems persisted, but for different reasons. I was told I couldn’t participate in Physical Education class or play any sports whatsoever. My mom told me not to worry, as she knew I’d find something else to interest me instead. My parents raised me with the mindset that I wouldn’t let hemophilia define me.  If I found something that caused me to bleed, I simply found another activity to take its place.

Since I couldn’t play sports, I learned to play the flute and went on to be the first-chair flutist through junior high and high school. I played semi-professionally for a while after high school.  Instead of taking gym class, I took art class and learned all about art, which I still love today.

When I learned to drive a car, I learned to drive cars with both manual and automatic transmissions. After driving a car with a manual transmission, I got a major bleed in my left hip joint. This caused my left hip joint to bleed every time I’d drive one. When I joined the marching band, which I loved, both knees and one of my ankles got repeated bleeds until I had to stop marching. I became the manager instead and played with the band in the stands.

Growing up with hemophilia, we didn’t have the hemophilia associations there are today. I never went to hemophilia camp. Aside from relatives, I never met any other hemophiliacs. When home infusion became an option, my mom wasn’t comfortable with learning to do it or me doing it at home. She had our routine down and was most comfortable doing that. After all, she’d been doing her routine since 1952 between my brother and me.

When the HIV infection hit the blood supply, I don’t remember anyone ever really talking to us about the risks of what could be in the product I was getting. I was in high school at this point and still receiving Cryoprecipitate numerous times a year. My oldest brother was somewhat of a rebel, a biker, musician and tattoo artist. He led a rough life at times and as a result, had many, many bleeding episodes. He was receiving Factor VIII numerous times per week, whereas I was getting infusions numerous times per year.

I remember us finding out around 1986 that my brother Billy had tested positive for HIV. My parents didn’t understand anything about HIV or what that diagnosis meant. None of us did. The doctors immediately began testing me and I was negative for HIV. I’m convinced that my doctor’s decision to give me Cryoprecipitate saved my life. I remain HIV negative today.

Sadly, my brother died in 1991 from a hemophilia-related bleeding problem. He was also experiencing full-blown AIDS at that point, so he wouldn’t have survived but maybe another year.

I lived the next 20 years wondering why I was spared when so many hemophiliacs were taken because of HIV and I was spared. I soon had my answer.

After high school I went to work in the corporate world for nearly 20 years, eventually ending up in senior management level positions. In 2005, my mother was diagnosed with terminal lung cancer. My dad had already battled two types of cancer and wasn’t doing well either. My mom died in 2005. The day after her funeral, I received a call from my boss in California, where I was living and working, telling me that my job had been eliminated and I’d been laid off. I’d just taken this job managing 600 employees and moved from New Orleans three months earlier (1 year before Hurricane Katrina).

My dad wasn’t doing well, so I moved home to Virginia to help him. After a few months of sending out resumes all over the country, I suddenly had an epiphany. I realized that my true calling was to be a nurse. I thought about this when I was graduating from high school; however, in 1987 men were not widely accepted as nurses. My parents reminded me “being a nurse is a woman’s job.” Back then it was.

In the summer of 2005, I made the decision to go to nursing school. I decided to become a Licensed Practical Nurse first. I completed the accelerated program in one year and passed my state board examination on the first attempt. After graduating nursing school, I went to work at a local hospital near my home and worked as a LPN Staff Nurse on a Medical/Oncology in-patient unit.

Due to the physical demands of being a staff nurse, I began to have more and more bleeding problems each year. In 2009, I had nearly 40 spontaneous bleeds. All along, I’d also been going to school working towards becoming a Registered Nurse. Sadly, I had to leave my nursing career because of the bleeding problems and degenerative damage to my joints. I’m now on disability and trying to stay active by working with projects related to the hemophilia community.

So, yes, I can say that my life living with hemophilia has been much like a roller coaster. There have been many ups and downs, twists and turns, screams and thrills. I wouldn’t have it any other way! It’s made me a strong, resilient, compassionate and caring person.