Bleeding disorder FAQs
These answers are a starting point. Your factor level, inhibitor status and local hospital supply change what is safe for you.
Is haemophilia the same as thin blood?
No. The blood does not clot properly because a clotting protein is missing or blocked. People with haemophilia do not bleed faster from a small cut in every case. They bleed longer, and they can bleed inside a joint or muscle.
Can girls have haemophilia?
Yes. It is less common, and it is often missed. Heavy periods, bleeding after delivery, and a brother or uncle with haemophilia are reasons to test. Read the page on women with bleeding disorders.
What is von Willebrand disease?
It is a different inherited bleeding disorder and the one most often found in women. The tests and the treatment are not the same as for haemophilia A. Ask for a specific test if periods are very heavy.
Can haemophilia be cured?
Standard treatment controls bleeding. It is not a cure. Gene therapy is discussed in some countries for selected adults. It is not a service NHS can book in Nepal today. Be wary of anyone who offers a cure online.
Why is prophylaxis not given to every child yet?
Regular preventive factor is the standard NHS wants. Supply, cost and the number of trained centres still limit it. On-demand treatment is what many families receive. Ask your centre, and tell NHS if a child is having repeated joint bleeds.
Are emicizumab and extended half-life factor available?
They are used internationally. In Nepal they depend on what a centre can obtain, including occasional humanitarian supply. Do not assume a product is in stock. The centre will name what they can give.
What if factor stops working?
Ask for an inhibitor test. Do not keep raising the dose without a plan. The inhibitors page explains the next questions to ask.
Can my child play sport?
Many children do. Swimming, walking and non-contact games are usual starting points. Football headers, wrestling and other high-impact sport need a conversation with the centre. Shoes, guards and a warm-up matter.
Should we avoid all injections?
No. Vaccines and necessary injections should still be given. The team uses a smaller needle where possible, presses on the site afterwards, and avoids an intramuscular injection when a different route is safe. Tell every vaccinator about the bleeding disorder.
How do we register with NHS?
Call 01-5172729, email nepalhemo@gmail.com, or use the join page. Bring whatever test results you have. Registration helps the Society plan supply and advocacy. It is not a substitute for hospital care.
This page is general information from Nepal Hemophilia Society. It is not a diagnosis or a treatment plan. A bleed, a head injury, or bleeding after an accident needs urgent hospital care. Ask your treatment centre before you change any treatment.