My mother has linked me to a hemophilia B support group on Facebook. It’s lovely to see all these women sharing their experiences and really guiding one another through the journey we have all found ourselves on.
I’ve been feeling my way alone up to this point but I am really enjoying the fact that I can ask questions and get real answers from real people who have been there. And because I have been actively communicating there my previous thoughts about hemophilia are being changed. I have always loved our clinic and the people there. I have been immensely happy with how we have been treated until recently. This no prophylaxis thing has been bothering me I’m not going to lie. I think he needs it before he has a target joint. Any bleeding that occurs in a joint damages it, ANY. Once that damage is done there is no
repairing it, that’s it, sorry about your bad luck hope it doesn’t give you too much trouble when you are older. I’d like to prevent Anthony having issues if at all possible. And it IS possible. However our very own Dr. J doesn’t feel as though treatment is warranted until he is already having issues. He says that historically prophylaxis is used to stop joint bleeds from worsening. I happen to know that the meaning of prophylaxis is preventative medicine. Seriously, look it up. That being said should a diabetic wait until he/she goes into shock to receive insulin? No. They get insulin every single day to prevent diabetic shock. This would be the only example of common prophylaxis I can think of at the moment but I feel as though my point is made. Severe hemophilia is what it is. We can’t change his DNA to include something that was left out generations ago. We can, however, add what he needs to make him somewhat safer. I am reading stories from these women about how their children are able to play not just any sports but contact sports. We were told that would never be possible. It saddens my heart that my HTC is not as progressive as others. It saddens me even more that because of their lack of modern thinking we will probably have to find somewhere new to go. Good people and doctors that we are comfortable with is important but what is more important is that Anthony receive the sort of health care he deserves. I am bothered mostly that I didn’t feel like I needed to look into the things they told me at clinic until now. Generally when I’m told anything health related I’m at home researching it, asking questions, looking at other medical point of views. When I walked into the office at clinic for the first time and they explained to me how there would be no sports allowed in his life I accepted that as law. That’s it. Pack it up now everyone, no bleachers for us cheering him on, don’t buy him a baseball glove or teach him to play football. Part of accepting the things that happen to you in life is knowing where you can test the limits. I don’t know that they will ever find a cure but I’ll be damned if I ever again think that he can’t do something because of hemophilia again. We are going to pay attention, do the research and try something new all the time. And if he happens to have a bleed at least I’ll know how to infuse him at home.