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Accessing treatment – Leah’s story

What does access to the latest evolution of haemophilia treatments mean for a family? Leah shares her experience about new treatments for her youngest daughter, who has severe haemophilia.

The overwhelming majority of people living with inherited bleeding disorders around the world still do not have access to diagnosis, treatment and care. Led by the World Federation of Hemophilia, the global bleeding disorders community shares a vision of Treatment for All, where all people with bleeding disorders have access to treatment and care, no matter where they live.

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There was a big change in our quality of life when the long-acting factor started to come on board. My daughter started her first year of school, although that was a COVID year and a bit disruptive. But she had very few admissions to hospital.

By the time she started the next generation of treatments, I don’t think we’ve had an admission. She’s had two very minor bleeds.

So, life is completely different. She can go to school. She can live. I don’t need to worry about every single school-mate party ending up in hospital afterwards, which is what used to be the case for us.

I feel really fortunate that we’re in the era that we are. She’s still going through a lot, but she’s going to be able to have her big haemophilia trauma days as a kind of memory.

But we are very conscious that not everyone in the world has access to the amazing treatment options that are available now. So, we feel really fortunate.

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