Tuesday, March 27, 2012

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.

Saturday, March 17, 2012

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.

Wednesday, March 14, 2012

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.

Wednesday, March 7, 2012

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.