Wednesday, 27 January 2016

On the road to a cure?


stem cells, MS, multiple sclerosis, Mum, toddler, parent
Stem cells



I had an emotional day last week.

There has been some amazing news for MS sufferers (well potentially amazing).
They have found out that using stem cell treatment to reboot the immune system can put people with MS on the road to recovery!

I documentary on the BBC last Monday which showed how two people in particular had responded to the treatment, and it was nigh on miraculous. It is frankly amazing, and really illustrates how things have come on in the last 15 years....and will potentially develop over the next 15. As the years have gone on, I have become less and less worried about my future as an MS sufferer, which is reassuring. Even 5 years ago, I still assumed that I would deteriorate and eventually die from complications caused by the disease (apologies for the morbidness), but not now. I wrote a blog post a year or two ago about how relieved I was because all of a sudden there were more effective drug options, so everything looked positive. Compared to the relief I felt when I heard about the stem cell treatment though, that was nothing!

However, I did find that watching the documentary affected me in different ways.

Firstly, of course, I felt super excited. I mean, the woman they covered, Holly, had been in a very similar situation to me and the treatment had basically made her MS dormant, meaning she could bring up her daughter without the constant struggle of day to day symptoms. Then Steven, went from having no feeling from the waist down, to riding a bike! Within a few days (DAYS!!) of having the transplant he could wriggle his toes again. Of course I feel flipping over-the-moon.

But I was surprised by how the documentary brought on so much sadness. It's really not my style to be all "woe is me", but it made me realise how much I have struggled and suffered over the last 15 years and the thought of not having it anymore sort of made me feel more angry. Like "f*ck you MS!!" angry, obviously not angry that they've made so much progress! Steven's MS had been mild before his quick downward cycle that caused him to be in a wheelchair. Before that though we was a very active man, running marathons and taking his kids on adventure holidays. I'm sure he suffered more than the article let on (after all, I know from personal experience how in the media they like to have a strong contrast), but it did make me reflect on what I've potentially missed out on. I wouldn't have my life any other way now - I'm the happiest I have ever been - but I guess it's natural for me to think "what would I have done if my MS hadn't stood in the way?". I would have been able to work towards any career I wanted (or just have one in the first place!). I would have been able to go on holiday wherever I wanted..hell, the list could go on. Being diagnosed when I was 18 has meant that I have had MS my whole adult life. I can't remember what it's like to not have to think about it every day, and it's weirdly scary. These are thoughts I never thought I would be having, because it never seemed an option that it would be over, but the way research is going now, it seems more like 'when' they find a cure, rather than 'if'. I'm getting way ahead of myself, I know. Then again, if the results from the trial are positive, I could be potentially be "back to normal" by the time I'm 40, maybe before. After all, it's going to be a cheaper treatment than the current medication (a one-off £30000 payment, instead of that yearly for current medication) so you could see the government and NHS trying to push it. It's just such a big thing to comprehend, and I'm struggling with it. It's too over-whelming.

Feelings and thoughts about my past were probably kicked off more by the fact that the consultant that has pioneered the research in this country is none-other than Dr Basil Sharrack - the consultant who diagnosed me. 15 years ago, I was walking the same corridors in the documentary and being told I was ill. I remember at the time trying to be positive about it, I was determined to not let it affect my life too much. I think I told him I was going to try and do a marathon! As if! :D Reality kicked in shortly after, I seem to remember.

Of course, I've got plenty of time to get my head around the possible idea of having this treatment. They are looking for people to be on the trial and have it, but I don't quite fit into the criteria at the moment. If I had two relapses in 12 months again, I would be. But it would be a HUGE undertaking at the moment. I would need to have chemotherapy, and be in isolation for 3 weeks. Definitely a big decision not taken lightly.

Anyway, I've decided the sensible thing is to go with any feelings I have, but try and not think about it. After all, there will be more information in 2 years when the results come out. They are still unsure of the long-term side effects, after all. Also (me being a bit of a cynic), if they can reboot your immune system to before MS, but they don't know what causes MS, whose to say the same won't happen again? Obviously, even if it gives you 5-10 years symptom free then it's worth doing, but there are obviously still so may questions. So until 2 years from now, it's time to concentrate on the here-and-now, and starting Tecifidera. Hopefully that will be a big help in itself, and I can just be reassured that they are working on a cure and one of these days this blog will just be about being a Mum harassed by two children and that's that!! :)

If you would like to see the Panorama documentary, click here.