I was diagnosed with relapsing remitting MS (RRMS) in my early twenties and, after the initial flurry of appointments following diagnosis, and doing my own research online, realised that there seemed to be very few reliable treatment options for this condition. Not a lot was known about what caused MS and, faced with this seemingly untreatable yet also serious health condition, I spent about eight years managing my diagnosis while trying to mention it as little as possible to others while completing my Sound Production degree.
I spent most of my late twenties and early thirties finding ways to manage relapses, the symptoms of which have included whole body numbness, loss of the use of both hands, right eye blindness, vertigo and double vision. Thankfully these symptoms did resolve however left scarring on my nerves. This results in reduced vision in my formerly blind eye and hands that don’t function very well with repetitive tasks (hello typing and writing! :)
This semi-denial worked for me until about 2010 when I started to become a bit ‘limpy’ which I did my best to hide. After a couple of memorable falls and fractures I decided to face up to being slightly rickety and got a hiking pole that I used occasionally in public. Since then I’ve needed to get used to being visibly disabled, and switch between two hiking poles for very short distances and a wheelchair everywhere else.
The reason I am asking for help fundraising is to help pay for Haematopoietic Stem Cell Transplantation (HSCT) which is the first treatment I have ever got excited about and believe could work. It could be truly life-changing.
HSCT is a procedure that aims to reset the faulty immune system which, in my case, is attacking my nervous system from within. Stem cells will be taken from my bone marrow or blood before my immune system is wiped out with chemotherapy. My cells are then reintroduced into my blood, where they grow a new immune system which will hopefully no longer attack my nerves or have any ‘memory’ of MS.
The aim of HSCT is to completely halt progression, putting MS into remission with no requirement for immunosuppressant drug therapy. The success rate for relapsing remitting MS is 80% - 90% which is absolutely phenomenal compared to the limited available drug treatments, which only aim to slow down disability.
HSCT is available on the NHS, however there is a very strict criteria for which I do not qualify. The expense of the treatment and the increased pressures on the public purse mean the NHS will only treat patients who have been diagnosed for fewer than 15 years.
I have been diagnosed for 18 years.
I had prepared myself for this possibility and, for the last year, have been researching treatment with The National Pirogov Medical Centre Russia (Moscow). Russia has been pioneering in their use of HSCT to treat MS and are world renowned for their expertise and care. I’m excited to have a treatment date in March 2021 which fills me with hope for a future free from progression. I need your help to get there.
The cost details are:
I am incredibly grateful for any help you can give towards enabling me to access this life-changing treatment.
After almost two decades of managing MS flare-ups and their consequences, it’s hard to put into words just what a future without them would mean to me.
Thank you for reading this and for any help you can put towards this goal.
Joceline x x
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