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Ed’s story

EHL – an immeasurable difference

My name’s Ed, now in my 30s, I have severe haemophilia A, diagnosed when I was 18 months old. I’ve been on prophylaxis since before I was 10. During my childhood, I remember constantly having injections every other day and still having bleeds.

I’ve been on the EHL factor replacement trial for nearly three years now. For the first six months, there were a lot of blood tests – firstly while they were getting my dose and interval between injections right. But a lot of it was for the trial doctors to get data on how I was responding to the drug. I don’t think there will be so many for new patients once it’s licensed.

I now have a factor replacement injection every five days instead of every other day, which doesn’t sound much but it’s an immeasurable difference. Actually having the injection is the same as it always was. The mixing up is no different and all in all, it takes the same time – about 15–20 minutes. I work shifts and have early starts so it’s great not having to get up half an hour early every other day to give myself an injection!

I haven’t noticed any side effects at all. Generally, I feel exactly the same physically. I’m certainly not having any more bleeds and may be having less. As an older person with haemophilia, it’s not always easy for me to tell the difference between a new bleed and arthritic joint problems I’ve already got. But since I’ve been on the new drug, I haven’t had to miss work at all because of a bleed and I haven’t had any dramatic bruises like I used to get if I bashed myself.

When I was injecting every other day, I had to switch arms each time as there was usually still some bruising. Now my veins have longer to recover. I used to be aware of track marks on my arms but not so much now.

It’s a bit difficult to say if it’s changed how I manage injuries as, while I’m on the trial, I have to get special permission to give myself an extra injection, and wasn’t allowed to have one before I did something active. I did hurt myself a few times but only had to treat once a few hours after the injury and then keep an eye on it. Before, I’d have had to treat straight away and keep treating until it was better.

The main difference for me is that it’s freed me up. Practically, I don’t have to plan ahead as much. Before, if I was planning a bike ride, I’d have to think about when I’d had my last injection and whether to have an extra one beforehand in case I fell off. Now I know I’m covered.

Psychologically, it’s also had an impact. Injecting has become more of a non-event, whereas it used to be the elephant in the room, and on my mind most of the time – ‘where will I go if I need to inject’ and so on. My partner doesn’t take much notice of when I do my injections now and I think it’s made her more confident, with travelling and that sort of thing. I also used to have to take factor VIII everywhere in case I needed it and now I don’t feel I need to, unless we’re on holiday or something.

Obviously my close friends and colleagues know about my condition, but it could be a bit awkward around people I didn’t know so well. There is an embarrassment factor in having to make excuses about why you have to slope off for 15 minutes to give yourself an injection. On some occasions – when out for the day, for instance – I’ve ended up injecting in the car as I couldn’t get any privacy anywhere else. You don’t always feel like going into long explanations about it and not having to do that feels like a real weight off my shoulders.

I think this type of treatment would be good for teenagers. I wasn’t all that compliant with my prophylaxis when I was that age. I used to tell my mum I’d done my injection when I hadn’t sometimes – if mates came to call for me, I’d much rather go off with them than sit in my room for half an hour injecting myself. Doing that caused me some joint problems that I might not have had, so anything that helps teenagers stick to their treatment can only be a good thing.

I plan to stay on the EHL factor when the trial ends. If I was younger, I think I might not be so sure. I was more physical then and it was easier being able to inject on demand if I was going off caving or on my bike. But once the drug is licensed, I hope people may be able to use it more freely than I can on the trial, so that might not be a problem.

What I would say to others with haemophilia A is to definitely ask your haematologist about it. It’s been really good for me.