Bruce's journal (original) (raw)

As some of you may know, my mum has, for the past twelve years, suffered from rheumatoid arthritis. Early on, she was loathed to admit that she was finding it harder to do everyday tasks and became depressed and irritable - but once she finally told us of the pain she was in and sought help, things started to improve. Coping with it wasn't easy - she proved to be allergic to nearly all of the medications she was prescribed and ended up taking a cocktail of drugs, each to offset the side-effects of the others.

Last August, however, a rare side-effect of the primary drug caused her to develop myositis - an autoimmune disorder where the immune system begins to attack muscle tissue. The effect was crippling. She found herself barely able to climb stairs as her body weakened. Worse still, the only treatments offered caused her liver function to deteriorate dangerously. Left with no drugs to prescribe her, she was moved to large doses of steroids - a short-term measure at best.

Two weeks ago, an alternative was offered to her - immunoglobulin replacement therapy. It had never been mentioned before because it was seen very much as a last resort. This is for two reasons; firstly, there is a chance of anaphylactic shock and secondly, and more crucially, it is considered too expensive. The only reason she was allowed to have the treatment at all was because her specialist could argue that there was no other recourse - and that her combination of illnesses was pratically unheard of (to date, I believe, only 4 people in the UK have both disorders).

She had the treatments last week, finishing on Saturday morning. When I spoke to her on the phone this evening she explained how she had woken up Sunday morning and felt something was missing - before realising that it was the first time she'd woken up in twelve years without being in pain. It's still early days - but first signs are that the therapy has cured both the myositis and the arthritis. The effect is nothing short of miraculous.

All of which brings me to two things. Firstly, I'm horrified how many people with similar immune system disorders go through life in 'tolerable' amounts of pain on medication because the NHS cannot justify a £10,000 course of treatment. Secondly, I would appeal to people who can (and are eligible to) give blood to do so - mum's course of treatment required immunoglobulin from 10,000 donations of blood. I can't give blood (and neither, I know, can many of the people on my friends list) because I've had sex with another man - but I would if I could.