The Odyssey Begins...
Well. I'm feeling really awkward; it's not comfortable for me to write about myself so publicly. However, I wanted to write this blog so I can update people about what's going on with the treatment - both in the planning stages, and while I'm over there. So here goes:
Basically out-of-the-blue in February, I decided to look into stem cell treatment (Hematopoietic stem cell transplantation (HSCT)) for my multiple sclerosis. I'd heard about this a couple of years ago, but didn't seriously consider it - it seemed prohibitively expensive and just generally not 'proven' enough for me. HSCT involves (at a basic level) suppressing the immune system with chemotherapy, and transplanting the patient's own stem cells (extracted before the chemo) to assist with the immune system's re-boot. The idea, as a treatment for MS (and other auto-immune conditions), is that it re-sets the patient's immune system, so that it stops behaving inappropriately and attacking the person's body.
M.S. involves a person's immune system attacking the fatty conductive layer around the nerves (the myelin sheath) in the central nervous system (CNS). The CNS is made up of the brain, spinal cord, and optic nerves, and (WebMD puts it best) 'controls thought processes, guides movement, and registers sensations throughout the body.' When the myelin is damaged, messages are disrupted because the nerves struggle to get signals through. (Well, that's a very basic description, I'm not a doctor!)
For me, I have an active form of relapsing-remitting M.S. (RRMS). RRMS means that I have attacks in which a particular nerve or system is affected, and will manifest in some way, depending on where the damage is. So attacks may affect a lot of things, such as vision, walking, balance, focus and memory (cognition), strength, and / or bladder and bowel function. RRMS works so that with time, the damage will heal, either completely or partially. Unfortunately, I've had a lot of repeated damage to my walking functions, so there is quite a bit of residual damage there, and that is what is the most objectively apparent as a struggle for me. I walk with a crutch when I'm out of the house (although a couple of years ago I was using a walker, it has been sitting in the shed since early 2015! So that's a small win, and shows that the damage is healing, veeeery slowly, but surely).
So anyway, I started researching and talking to others who've had this treatment. From my research, I realised that there were several reasons pointing to why now is the time for me to do this. Currently-available research shows that HSCT for MS works best for people who:
- are still in the RRMS stage of the disease (as opposed to a more progressive form);
- have been diagnosed for less than 10 years; and
- are younger than 35.
I tick all of these boxes.
For the last two years I have been treated with Tysabri (natalizumab), and this has been working well to stop further relapses (attacks). However, prior to commencing Tysabri, I was not responding to all three first-line treatments available for MS in New Zealand (Avonex, Copaxone, and Betaferon). When I have to come off Tysabri (not if, I will either lose eligibility for this treatment, or it may become too dangerous for me), there is no alternative pharmacological treatment currently available in NZ to treat my MS. Based on my history, it would be a quick descent into progressive MS, and severe disability.
So I've chosen for this not to be my future, and in late June/early July this year I am going to Raffles Hospital in Singapore for HSCT. In making this decision, my main objective is to prevent any further damage or progression. However, based on the positive factors listed above, there is also a chance to repair some of the damage that has already occurred in my body.
So it's daunting, but also exciting! I will be over there for about three months, as an in-patient for under a month of that, and I'll stay in an apartment close to the hospital for regular outpatient tests and monitoring for the rest.
Here are links to some information about the treatment, and the research that guided my decision:
And now, to the fundraising! Thank you for listening 💜
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