Hi, my name is Jill. I’m 46 years old and live in Bristol, UK.
This is about me and my Multiple Sclerosis.
Prior to 2000, I was a happy mother of one going about my life without a care in the world, looking forward to raising my son and enjoying life being a parent. Then I started to fall ill with muscle pains, memory problems & constant fatigue.
Around 2003 I started to have problems with my eyes. A year or so later I temporarily lost the sight in my left eye. The consultant told me that if my sight came back it would be a clear sign of MS. Fortunately the sight returned, but it then took until 2010 before a formal diagnosis of MS was given.
Multiple Sclerosis (MS) is a ‘hidden’ disability – the worst kind.
People can’t see the difficulties and pain that MS sufferers have to cope with, and therefore have trouble understanding the difficulties we face. Before MS took hold, I was an active mother and qualified IT Engineer. Now I work part-time in an administration role It’s only 4 hours a day but i really do enjoy working in the environment that I am in. It’s nice that I have great support from my team leaders and managers ensuring my needs are met. I wish I could do more, hopefully after this transplant I can. My husband is my constant carer, juggling a full-time job and keeping the house in order. Luckily for me, I have good people around me who do understand, and help me try to cope. It’s good to have people like that around, I recommend it.
I guess you can read anywhere on the internet about MS and the symptoms – I’ve posted a short summary in the ‘What Is MS?‘ link above – all very clinical, if you ask me. This blog is intended to document my daily life – the ups as well as the downs – and to follow the progress of the work to fund-raise for my treatment.
There is currently no cure for MS, but there are options. A life of DMD’s (Disease-Modifying drugs) with side effects worse than the symptoms they are supposed to alleviate.
Or how about something that has more positive results, something that is real and not just a chemical nightmare keeping the profits of Big Pharma ticking over nicely?
AHSCT -Autologous Haematopoietic Stem Cell Transplant
(aka ‘Bone Marrow Transplant’)
A-HSCT involves harvesting a supply of the patient’s own stem cells, separated off from their blood using a similar process to kidney dialysis. These are then stored whilst the patient is treated with chemotherapy to ‘knock out’ their existing faulty immune system (mature white blood cells). The stem cells are then re-introduced and allowed to develop into new, working white blood cells – in effect, a brand new immune system – A REBOOT!
It is important to state that this is NOT a cure for MS – I will still have the damage done already to deal with. But, so far all reports, both medical & anecdotal, show that it stops MS from progressing. There are other treatments in the pipeline that are showing good results in rolling back the damage that MS has caused to the nervous systems of sufferers.
There are down sides to the treatment – chemo is very hard on the body and mind, and recovery to a fully fit immune system takes many months or even years. The upside is that, so far, all those who have received AHSCT have survived to report results varying from ‘fair improvement’ to ‘fantastic’ (even ‘miraculous!’, if you’re that way inclined). The primary benefit that many neurologists overlook in these outcomes is ‘Quality Of Life Improvement‘. This is where AHSCT really shines through. The fatigues and the fogs generally lift or vanish, giving the treated a huge, even life-saving boost to their well-being & the ability to cope with the pain and disability MS has given them.
AHSCT is not currently available as a standard NHS treatment, and it is only possible to get the treatment as part of a medical study, or with entry requirements that only the most extreme sufferers can pass. It’s a pity, because it would cost the NHS £30,000 for each treatment and no further drugs are required, whereas the average annual cost of current medication is £30,000 per patient.
I am not alone. There are thousands of MS sufferers trying to raise money for treatment abroad. I need to raise money for my treatment. If any money is left I will use it to help others and really push to help awareness that your money doesn’t have to line the pockets of the drug companies who don’t want to cure us, but can actually provide positive treatment that will give people with MS the chance to have their lives back.
I’ll be going to Russia for this treatment hopefully in 2018 (see blog update)
*Please note, the above counter is not live and will be updated periodically, for a live total please visit our GoFundMe page*
Lets get the heat on and get this rising!