Can kids with hemophilia stay active and live a normal life?

Question

Hello doctor,

Our 12-year-old son, a passionate soccer enthusiast, was recently diagnosed with hemophilia following a minor fall that resulted in severe swelling and pain. He has also experienced prolonged bruising from minor injuries. We are struggling to understand this sudden change in our active child's life. I have heard that hemophilia is hereditary, but I am certain that no one in my family or my husband's family has this condition; it is very confusing. How will this affect in daily activities? We have started factor replacement therapy, but is it effective in the long term? Are there any new treatments that have been developed recently? How can we ensure his safety while allowing him to lead a normal, active life? What precautions should we take at home and at school? Although his teachers and friends are very careful around him, we remain concerned. Will this disease ever go away, and will he be able to live a normal life? Kindly help.

Thank you.

Answer 1

Hello,

Welcome to icliniq.com.

I read your query and understand your concern.

I hope your son is doing well. Hemophilia is often a familial condition, typically inherited from the maternal side. You might be a carrier, and possibly, your brother could have hemophilia as well—though it is not certain. Sometimes, a distant cousin may be affected while others are merely carriers, or there may be more females who are carriers, passing the condition on to their sons.

How was your son diagnosed? Which labs were used? Hemophilia is usually identified early in life, around one or two years old. Being diagnosed at the age of 12 suggests he may have a mild or moderate form of hemophilia. In both cases, factor replacement therapy is necessary only when needed, such as during bleeding episodes or before surgery. Otherwise, individuals with hemophilia generally lead normal lives.

You should get his factor assays conducted when he is not bleeding and has not recently received factor replacement therapy, or if his initial assays indicate which type he has. Factor replacement is the mainstay of treatment for hemophilia, though other options exist, it remains the best available treatment for now.

He should wear protective clothing like knee and elbow covers and avoid high-impact sports like soccer. If he has been normal up until now, he may continue to be so. Sometimes changes occur during growth that later stabilizes, and the situation becomes manageable.

It is important to wait and see, monitor his levels and daily activities, and keep him informed and educated about his condition. You should continue consulting with that hospital if he was diagnosed at a reputable facility with all necessary tests. If you doubt the diagnosis, consider seeking a second opinion.

It would be helpful to review his medical reports for a better understanding of his situation. Hemophilia is a genetic condition and cannot be reversed; it has only become apparent now. Learning to manage it is essential, as many people lead fulfilling lives with this condition. Caution is advisable, and it is important not to make him feel overly special as he approaches his teenage years, which could be unsettling for him.

Best wishes to you, and I look forward to a follow-up with his reports.

I hope that you get your answer.

Please revert in case of further queries.

Thank you.