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Steve’s story

Steve’s story

Confidence and reassurance from EHL

Hi, I’m Steve, I have haemophilia A and was diagnosed as a baby. I’m in my 40s now and through the haemophilia treatment used at the time, I became infected with HIV and hepatitis C when I was 12. I have to have a lot of medication and I haven’t got very good veins, so I’ve never been that keen on having prophylaxis. I only have two veins that are really good that I can inject in and I worry about damaging them with injections every day or two.

I’ve been on the EHL (extended half-life) drug for two or three years now. I was having it every four or five days, but I dislike having injections so much that I badgered the hospital to let me have it weekly and they agreed. For them to get me to have any injection weekly for this long is amazing really!

It’s hard to say how the new drug has affected my bleed rates as I wasn’t on prophylaxis before. It has made a difference to my recovery though. I had a major hip bleed recently when I was abroad and gave myself the EHL factor every two days for a few doses to try and keep my levels really high. About 12 days after the bleed, it was virtually healed. Previous bleeds I’ve had in the hip have taken six months to get better. I had one as a child that took nearly a year.

I haven’t noticed any side effects really. When I was taking it every two days for the hip bleed, I did have quite frothy wee but I don’t know if that was to do with having the factor so frequently or just a coincidence.

The main benefit of this treatment I’d say is the increased confidence it gives you. Because I wasn’t on prophylaxis, I managed my condition through managing my activity levels. I only used to walk a total of an hour a day; otherwise I’d get ankle bleeds. Now I’ve got the added reassurance of the long-acting factor, I feel OK about staying out all day.

I also feel more reassured when I go away for the weekend or on holiday that I’m protected for longer. Now I have confidence that if anything happens, I’ll be able to get home. It’s better for me during the journey too. There’s always so much walking and standing around in airports. I know that I’m covered if the plane gets delayed for example. Because the injections are only once a week, there’s a lot less stuff to take when I do go away. I used to have a suitcase full of factor! Now, four little boxes will last me all week.

So overall, I’d say the key thing is that it gives you confidence and reassurance. When I was at school, my mum had to fight for me to be treated the same as other kids in going out to play and doing sports. For young kids now who are at school and want to participate in sports, I think this product is a milestone in allowing them to grow up with less risk.

If anyone asked me whether to switch to this treatment, I’d say switch, without hesitation. Especially younger patients – if they get the opportunity to be on it, I think they should take it.