Hope. Caution. Hope.
The texts came, one after another, from six different friends as I was picking my way home from work along icy pavements.
“Have you heard the news?”
No, but I soon had.
A breakthrough in gene silencing research means that a drug injected into the spinal fluid has safely lowered the levels of huntingtin – the rogue protein carried in sufferers’ DNA – and will slow or even halt the progress of the disease. It’s not a cure but it’s the nearest thing there’s ever been, has safely passed the first stages of human testing (which is a biggie) and now researchers know they are on the right track.
AND (and this is an even bigger biggie, a huge thing) it has put HD onto the front pages of national news for probably the first time ever, so it is in the public eye and people are finally getting to know something about it. Recognition - it's what we have wanted for so long.
I knew there were clinical trials going on as Nick was invited to be part of them. It was three or four years ago now. He had been reading about gene silencing and was very excited about the prospects of a cure or certainly a slowing down of the symptoms. Unfortunately the onset of the disease affected his ability to concentrate and he became paranoid about opening his post in case there was something nasty in it. At least that was my rationalisation, as he couldn’t even vocalise his fears.
He had completed the first round of surveys to take part in the testing but as all the invitation letters went unopened after that, it never went any further. In the early days of his illness before he was diagnosed, he had got into a lot of financial trouble and the not opening his post was a clear echo of that – but now it was worse, I would go up to visit him and find great stacks of letters teetering in an in-tray, sticky with coffee and sometimes cat wee, more behind a door or stuffed into a cupboard out of sight. Weeks, months' worth of post. It could take me an entire evening to open them all and sort them into piles.
Some of them were lovely, handwritten letters with wedding or party invitations or postcards from his children or even a birthday cheque from our stepmother. Very obviously not final demands, but he still couldn’t bring himself to deal with them.
So the gene silencing information went unopened too and he never took part in the trials.
Nevertheless, he is delighted. "Do you think this would help me? If I had this treatment I wouldn't get any worse?"
It's early days, I say, we can only hope.
But I am cautious too. It is very early days and the research is still just that - research. The treatment may not be available in Nick's lifetime. But the possibility still lights him up, the thought that the world is on his side and he is not entirely alone with an illness that hardly anyone has ever heard of.
But I’ve been reading all the press about it and some of the descriptions of HD have made me so angry. Some reports herald the discovery of a cure – it is absolutely not. Not yet.
And there is varying accuracy in some of the commentaries. I know it’s science and not a filler piece about what the royal family are wearing at Christmas but for goodness sake, do a little bit of research.
The Express doesn’t even mention the characteristic involuntary movements or the ghastly, inexorable progression but references mild psychiatric disturbances and “a disease that may even turn deadly”
I feel like inviting their reporter to Professor Bandmann’s HD clinic to see just how deadly. To see with their own eyes HD patients like skeletons in an end of life nursing facility, or just to watch Nick trying to sit in the hospital’s weighing chair and moving about too much for them to get a reading.
We still don't know whether this drug will effectively slow the progression of the disease in people who already have it, hence my caution. But it's the first thing that has worked on a genetic level rather than just calming the symptoms, and that is a truly amazing thing, so we have to celebrate that glimmer of light and hope.
We saw Nick's children at the weekend and I’m just overjoyed to think that they might escape this fate.
Labels: HD awareness