Permanent Damage vs. A Foreign Substance

It’s Monday! Time to put on my big girl pants and make an appointment at Nemours. But for some reason I’m hesitating, procrastinating even. I love my doctors and nurses but this last decision about the prophylaxis is bugging me. Some of the women I have spoken to in other parts of the country are shocked when I tell them  that Anthony won’t be started on 2x’s a week treatment until he has more joint bleeding. But our nurse told me that it’s all about putting a foreign substance into my child’s body. Even though factor is something he should have anyway Anthony only makes less than 1% and so at the end of the day factor is foreign to him. He doesn’t need it yet. There hasn’t been any permanent damage done so far. But why wait until there are problems? Any joint bleeding will cause permanent damage! No he won’t go crippled from having a few bleeds in a knee but what about when he’s older? When the rest of his body is in revolt should he really be wondering if his knees would have less arthritis if I would have started him on prophylaxis before the bleeds started? And just because he is receiving prophylaxis does not mean that he won’t have bleeds anymore. They will lessen but sometimes there are break through bleeds. When you are as severe as Anthony nothing is absolute until they find a cure but I definitely want to take away as much of the risk as possible. I kind of wish Anthony was old enough to ask. Not that I want to wait just the decision might be easier if he could give me his input.


We have started a Twitter page in adition to the Facebook page. You can follow us at HemophiliaNHim or at I am crazy about all the support we have been receiving from complete strangers. One day Anthony will be able to get on here and see for himself how many people are aware and care about what he goes through. He learns his compassion from the people that show him compassion and thanks to all of you he has plenty of examples.


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