How can daily life be managed for a child with hemophilia A?

Question

Hello doctor,

My 7-year-old son was recently diagnosed with hemophilia A after we noticed he was bruising really easily. I am trying to understand what this means for his daily life. He loves playing soccer and riding his bike with friends, but now I am terrified he will get hurt. Do we need to stop all physical activities? What happens if he gets injured at school?

I have been reading about factor replacement therapy. How often would he need treatments, and can he learn to do them himself eventually? Also, his cousin is getting married next month in another state, is it safe for us to travel? I just want him to have a normal childhood, but I am worried about every bump and bruise now.

Please help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I understand your concern.

Hemophilia (a rare, genetic bleeding disorder in which the blood does not clot properly due to a deficiency in certain clotting factors) is a hereditary disease and a lifelong struggle. There are many types and severity the kids have to face with this bleeding issue and bruising problem. They need care and to avoid soccer or other games that may cause injury.

All this depends on levels of factors. If very low factor, then more care is needed, if moderate then less care. Factor replacements are available in different countries and their need depends on the severity and factor levels of the boy. In severe cases, it is needed twice weekly. In mild cases, monthly.

I would like you to send me complete reports to get better replies and solutions to problems. Factors can not be self-administered. They need a medical person or someone trained for that at home.

Life will be a tough thing with him but courage is needed to fight it as it is a lifelong thing and it is all in our minds. If we accept it and get ready then we can do it whatever difficulty arises. So, cheer up and do not worry much.

I hope this helps.

Kindly follow up if you have more concerns.

Thank you.