Why do people in the hemophilia community use social media?

I'm an advocate for using social media, but not everyone in the hemophilia community feels the same. In conversing with others, the question arises, "Why do people in the hemophilia community use social media?" Below I offer a few common reasons:

Some are driven by the affinity impulse. Our common base of experience (bleeding disorders) naturally draws us to connect with one another. For those dealing with bleeding disorders, it can be hard to relate to others who have not walked in their shoes, even if it is family. Much like war veterans bond through a shared experience, so do those affected by bleeding disorders (directly or indirectly).

Others are driven by a validation impulse, a desire to be seen as knowledgeable experts and reassurance of their place in the world or community.

Most people are simply seeking support. In such a small community, making and maintaining friendships online is often necessary. Some people live in rural or remote areas and others just prefer to stay in touch with cross-country friends they meet at conferences and summits.

Paying it forward is another popular reason people use social media. Many people receive support and learn about bleeding disorders from articles and information shared through social media. They are fed, in a sense, and they feel compelled to do the same for others (pay it forward).

The altruistic impulse drives some to help with advocacy efforts, support others... because they feel compelled to do so or they believe it's a worthwhile cause. This one is unique because it includes people unaffected by bleeding disorders who help simply because they want to help others. They do not benefit directly, themselves.

Why do you use social media? Share your reasons in the comments below.

I Gave My Son Hemophilia

I gave my son hemophilia. This is a bold and hurtful statement for me to make but it is based on the facts. When Tommy was first diagnosed, I made all kinds of uneducated reasons as to why he was born with a bleeding disorder. Although I did cut caffeine and energy drinks out of my daily routine when I became pregnant with him, I did drink one bottle of Coke per day. In my mind, this surely had to be a contributing factor as to why he had a bleeding disorder. I did drink the occasional glass of wine (which was OK per my doctor) and this surely had to be a contributing factor as to why he had a bleeding disorder. I slept on my side and I must have been suffocating him and this surely had to be a contributing factor as to why he had a bleeding disorder. These assumptions are humorous to me almost three years later, but I was not far off with the theory that I did give him this disorder.

I can tell you two possible scenarios as to why my son was born with a bleeding disorder. The first scenario is that it was a spontaneous mutation. There is no known history of hemophilia in the family, so it basically just happened with no known reason. The second, and most difficult scenario for me to accept, is that I gave it to him. Although my theories of drinking wine or Coke during pregnancy were far-fetched, it could have been reflective of a premonition that it was my “fault.” Being a female, the chances of me having hemophilia are extremely rare and uncommon. That is because hemophilia is an X chromosome disorder. Females have two X chromosomes (Xx) and it would be almost unheard of for a female to carry two defective copies of it. However, it is possible for a female to indeed carry a single defective X chromosome, while the other X chromosome remains normal, and this would qualify her as being a carrier of Hemophilia. Although a woman can be a carrier, it is generally assumed that her normal X chromosome picks up where her abnormal X chromosome is failing, and she will not suffer any bleeding issues. However, in the conception of a child, it is the mother who passes the X chromosome onto a son while the father passes his Y chromosome. Therefore, there is no chance that Hemophilia could be passed from father to son. Does that make sense to you? Yes, I still get confused with it as well.

Let me put it this way. Once again, a female is composed of two X chromosomes (female = Xx) while a man is composed of one X chromosome and one Y chromosome (male = xY).  Based on that, a woman will ALWAYS pass one of her X chromosomes onto her child (because that’s all she has) while a man will either pass an X or a Y. When a man passes his X chromosome, that combined with a woman’s X chromosome, it will produce a girl. Women are made up of two X’s remember? If a man passes his Y chromosome, combined with a woman’s X chromosome, it will produce a boy. So you see, my husband passed his Y chromosome to be combined with my X chromosome in order for us to have produced a boy. Hemophilia A is a blood disorder connected with an abnormal X chromosome. That chromosome was passed by ME. Now, as I am writing this, I have yet to have tests done on myself to determine if I am a carrier. However, the way I see it is that regardless if I am a carrier or not, I gave him that abnormal X. Either way, I am justified in blaming myself. Of course, anyone reading this can tell me a hundred different reasons why this is not my fault, but as a mother, I will always carry this weight.

I am not the type of person who looks for sympathy. On the contrary, sympathy from others makes me feel like my situation is a sorry one. My situation was an unexpected one and did derive a ton of sympathy from others in the beginning. However, I have embraced this life and I carry a heart full of pride for my son. In a few short years, Tommy has taught me what strength is. Tommy has taught me what drive is. Tommy has taught me to play with the cards I was dealt and how to come out with a Royal Flush. Tommy Cameron is my hero.

A Painful Life

Hemophilia is a blood disorder, not a curse. It is up to the person who is diagnosed with this disorder to determine how he looks at it. From the moment I was able to understand what was different about me, I made the decision to not allow my diagnosis to hinder the way I live my life. While making this decision, I also made a commitment to myself to live a productive life. By productive, I mean a life that would give me joy without necessarily putting me in any immediate danger. These two decisions have led me to where I am today.  

One of the biggest hurdles for me in my life was determining whether or not to treat prophylactically (prophy) or as-needed. Being on the border of severe to moderate Factor VIII deficiency, I was always told by my physicians that I should go to a prophy regimen. But as I said earlier, I was not going to let this disorder control me, so I decided to treat as-needed, and I continue to do so to this day. This decision is one that has had numerous ups and downs throughout my life, but one that I do not regret.  

When I was younger, I was extremely active in baseball, basketball and golf. These three sports, combined with my extreme competitive nature, created a recipe for numerous injuries and accidents. I rarely treated before any big event or game, and if I injured myself, I sucked it up and told myself that it was an injury that any other athlete could have gotten throughout the course of that sporting event. I would then go home, suffer from a sprained ankle or jammed finger, treat myself and move on. As I have gotten older, I actually treat myself less because I’m not quite as active as I used to be in sporting events. However, I do keep in shape and exercise which has always been key to my health for my joints and muscles.  

You can call this being hard-headed or stupid, but this was the way that I dealt with my diagnosis.  I do have pain, and probably more than some hemophiliacs because of my hard-headedness, but I am proud to say that I have always treated as-needed and refuse to allow hemophilia to control me. Instead, I will treat it. This decision is one that is tough to make, but one that each individual in my situation will have to make.

The Bad Touch

Warning: this article has content not suitable for children. Unless you let your children watch R-rated movies, then... never mind, that is probably way worse than this article.

I recently had a conversation with a fellow bleeder and they asked me an intriguing question. They asked if my wife and I had discussed my hemophilia before we made our son. I really had not realized the importance of having the conversation until I replied “no, not really.” I mean I understood it was important but my children were not going to be directly affected by bleeding. If you are familiar with the process: when two people really love each other, or they're both hammered out of their minds and feel lonely, they usually have some bad touches in places we are not allowed to talk about in public. Although, keep in mind, once people get married they do not really have bad touches anymore.

A quick genetic lesson: Males have an X and a Y chromosome and females have two X chromosomes. Hemophilia follows the X chromosome. I have hemophilia, therefore my son is not affected, although probably a little weird since I made half of him. If I had a girl (which I will not) she would be a carrier. Since none of the carriers in my family exhibit any symptoms (except in very extreme cases) more than likely my daughter would not have any concerns until she was ready to have children. It would not be until she was 40 because no one will be good enough (I am supposed to say that because the media and movies say I should).

So once my wife learned that our children would not bleed, there was basically a contest to see who could get naked first. I was not really excited at the time to have a kid but remember, once you are married, you don’t have bad touch. I was going to take complete advantage of these opportunities. Although in the end she really took advantage of my weak mind and desire to have sex multiple times in a 4-day span.

We did not really have the “conversation” after we got married though; it was way before when we were still friends. It is crazy to think, but what if she asked those questions and my answer could have determined a number of things. What if I said they would bleed everywhere? What if she did not like my answer and it resulted in her getting crazy with my friend(s) down the hall, completely ignoring me. On one hand my life would be much simpler now, but I would not have all of the wonderful memories. I do not think it is too far-fetched because I know a couple that had second thoughts about having children once they learned she was a carrier. I mean, you are bringing a child into the world that you know is going to have it harder than a child without a bleeding disorder. Now, I am not saying that it doesn’t make them stronger and/or a better person having the adversity, but it will be harder.

So I do not have a good ending to this snippet of my life. I should have had a more serious conversation with my wife when we were planning parenthood. I have always thought about only having boys because it seems easier in multiple aspects than dealing with drama (girls). Hemophilia stopped in my uncle’s family and he does not seem too bummed about not having a spoiled girl in the house. Is it despicable for me to wish for boys so I do not pass it on? I want the best for my children and their children and so forth with that crap. However, at the same time, I like the idea of having a special connection with my grandson. Being able talk about the good old days when I forgot to order factor and letting my ankle swell until there was enough pressure to stop the bleeding on its own. Discussing the difficulties and benefits and being a first-hand resource for my grandson would be unexplainably awesome. However, they would still have hemophilia.

I guess I could write out a pros and cons list, but that seems so logical and Vulcan-like. I was hoping so badly to have a son the first go around I tried to gamma ray my female sperm so I would have a boy. Who knows, maybe I accidently ended up doing it with microwaves or by having a cell phone in my pocket. However, the question still has not been answered and I cannot really come up with an honest answer. Although my wife says it is surprising because she thinks I am too honest and I should lie more. I am planning on taking full advantage of that verbal mistake she made, but do not know where to start first (tapping fingers together in succession and creepy chuckle). I guess for now I will enjoy the smile my son brings and worry about the next reason to start drinking when my wife wants another baby. I do know that this time, there will definitely be a more involved discussion about having a baby. Especially using reverse cowgirl and handcuffs…