Living with Hemophilia

This is not for me, but for my boss. I am not seeking medical advice, that is what the hemophilia doctor is for. This is more lifestyle advice, what is it like living with hemophilia. My boss’s daughter just had a son, and they discovered after circumcision that he has hemophilia. After he was transferred to a children’s hospital, and more tests were done, it was determined that he has severe Hemophilia type A.

My boss and her daughter are understandably a little freaked out, and while they are trying to stay calm and rational, could use some stories from people who have been there. So please, if you have hemophilia or know someone who does, what was their life like?

Here are some guidelines on dealing with hemophilia babies and toddlers:

The site is chock full of good information. Best of luck to your boss’s family.

My roommate in college had mild hemophilia, and doesn’t much have a problem with it. She has the unfortunate combination of being klutzy and having hemophilia, so her legs are constantly badly bruised, but she takes some medicine that I think it supposed to help the blood clot and after knowing her for four years, I don’t recall her having any major incidents.

So from what little I know about hemophilia, it obviously isn’t fun to have, but with the right precautions and medicine, it’s not a death sentence like it seemed to be in previous centuries.

Isn’t female hemophilia incredibly rare - needing both a hemophilia father and a carrier mother?

Forgot to add - the thought of discovering hemophilia after a circumcision was just what I needed to shudder for about the next 24 hours. That poor little guy. Hope he does all right. I know I was a nut about both my kids’ health when we got home from the hospital. I can’t imagine if they had come home with one more thing that made me feel like I had to watch them even more than the constant 24 hour breathing check (new parents are crazy, you know).

Yeah, but your roommate had mild hemophilia while this kid was diagnosed with severe hemophilia. I’m not a hemophilia expert, but I’d think that could be the difference between “always having badly bruised legs” and “have to go to the hospital because I walked into the corner of a dresser once”.

The having to go to the hospital becuase of a small accident is what has them worried. That and the internal bleeding into the joints.

They talked to the Dr. earlier today, and he gave them good news. Most patients respond well to the medication that adds the clotting factor to their blood. So, they will give him shots for now that will last for the next year, then after that they put in a shunt (since the the medicine has to be given intra-venously) and the parents administer the medicine 3 times a week.

Normally, the main problem I hear about with semi-permanent shunts is clotting around them, not sure how that works with him. No natural clotting agents, but thats where you are injecting the artificial clotting agents.

My boss says she feels better though, and they were re-assured that he could live a very normal life. Just not football or other high contact sports.