My child is newly diagnosed
Finding out that your child has a bleeding disorder is a shock. This guide walks through the first weeks after a test result in Nepal.
A new diagnosis changes a family’s rhythm overnight. You may feel alone, especially if the nearest clotting test was far from home or if no one at the local clinic had seen haemophilia before. Nepal Hemophilia Society exists so those first weeks are not spent guessing.
What the report actually means
Write down the exact words on the laboratory report: haemophilia A or B, severe, moderate, or mild, or another disorder such as von Willebrand disease. Severity is measured by how much factor is in the blood, and it guides treatment planning.
Photograph the report for your records and keep the original in a folder with clinic letters. Do not post the full report or your child’s name on social media. Identity and medical detail spread quickly online.
Your first calls and registrations
Call Nepal Hemophilia Society on 01-5172729 or email nepalhemo@gmail.com. The Anamnagar office is open Sunday to Friday, 9 am to 5 pm. Staff can explain membership, provincial chapters, and which hospital currently runs a factor assay.
Register with NHS so your family is counted in the national community and can receive event notices and advocacy updates. Registration is not the same as opening a hospital file — you still need a treatment centre for clinical care.
- Keep one folder for lab reports and clinic letters
- Save the treatment centre phone number in two places
- Ask NHS which chapter is nearest your district
Before the first bleed or bump
Ask the treatment centre what to do for a swollen joint, a head injury, or bleeding after a tooth. Write the answer on paper and give a copy to whoever cares for your child at school or daycare.
Do not buy clotting factor from a pharmacy advertisement or a neighbour. Product names, storage, and dose belong to the centre that knows your child’s factor level.
NHS can suggest plain language for teachers: what a joint bleed looks like, when to call you, and when to go straight to emergency care.
School, travel, and emotional support
Most children with haemophilia attend school when a plan exists. The plan should name who to call and what is not an emergency. It should not label the child in a way that invites bullying.
Travel within Nepal often means long bus rides. Know where the nearest hospital is on the route and carry the report copy. For air travel, ask the centre about documentation for factor if you carry it.
Parents often grieve the life they imagined before diagnosis. Meeting another family at an NHS meeting or chapter event is often the turning point. You are not failing if you ask for help.
When to go to emergency care
Head injury, neck or throat swelling, belly pain, black stool, or a bleed that will not stop after the plan your centre gave you — go to emergency care and say haemophilia is diagnosed or suspected.
Then call your treatment centre and NHS when the child is stable. The office cannot infuse factor by phone, but it can help with follow-up and advocacy if care was delayed.
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.