Discovering your child has hemophilia can be devastating. While you will certainly need to make some lifestyle changes moving forward, with the correct treatment and preventative measures, there’s no reason why your child can’t live a happy and healthy life.
To help you come to terms with life with hemophilia and feel more in control, the Hemophilia Federation of America offers the following advice:
Find a hematologist.
A hematologist is an expert in treating blood disorders, including hemophilia. A list of Hemophilia Treatment Centers in the U.S. can be found here.
Learn all you can about hemophilia and how to manage the disease. Use trusted Internet sources that are up to date with all the relevant information and research about the disease including symptoms to watch out for, how to detect bleeds, and what to do when bleeds occur. The more you know about hemophilia, the more prepared you’ll be to take a proactive role in the treatment of your child’s condition.
There are many online resources for patients and families where you can share information with others going through the same thing. Support groups offer both practical and emotional support and can be particularly useful in the first few months as you are navigating your way around the disease.
Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.