How can I keep my daughter with hemophilia C safe at school?

Question

Hello doctor,

My daughter was diagnosed with hemophilia C, and I am so confused.

I thought hemophilia only affected boys. How rare is this?
The hematologist mentioned something about factor XI deficiency, but I do not understand what that means. How serious is this compared to other types of hemophilia?
Will she need regular infusions?
I am worried about her starting school next year - how do we keep her safe?
Can she play sports, or is that too dangerous?
Also, I am pregnant again and worried about passing this on. Should we do genetic testing? Is there a cure on the horizon?

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I can understand your concern.

Hemophilia is one of the rare blood disorders, and it can also occur as type C, which is not sex-linked and may affect females. The impact depends on the severity of symptoms and factor levels.

Factor XI deficiency mainly becomes significant during trauma or when surgery is planned, where factor replacement may be required. Treatment varies from case to case, as some patients have mild, moderate, or severe deficiencies.

Your child can participate in sports, but it is advisable to prefer activities with a lower risk of injury, such as indoor games or low-contact outdoor activities. This is important because any bleeding episode may require factor replacement therapy. Replacement can be done using synthetic factors or cryoprecipitate derived from plasma.

There are also options to manage bleeding risks during pregnancy. Prenatal diagnosis through fetal sampling can help detect the condition before birth. This information can guide decision-making based on personal, ethical, and medical considerations, especially since there may be a recurrence risk in future pregnancies.

Currently, there is no definitive cure. Focus on maintaining your child’s overall health, including good hemoglobin levels, to better manage any potential bleeding episodes.

I hope that you got your answer.

Please let me know if you need any help.

Take care.