Well it’s a week into the school holidays and I’m finally starting to unwind a little. I have decided not to book a holiday or even a trip to the IoM and to just stay home, relax, see friends and get a few jobs done.
My garden is small and I usually manage it myself, but the recent warm weather combined with heavy rain fall, means that everything has grown madly over the last few weeks and it’s is now a bit beyond me!
I am still anxiously awaiting news from the hospital in Sheffield. I am expecting an appointment in “mid-August” but haven’t been informed of one yet. It’s very hard to plan anything at all, as I want to make sure I’m available for the appointment.
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I am one of those people who needs to learn as much as I can about things that affect me, so have been reading and researching all things Multiple Sclerosis since before I was formally diagnosed. It was through doing this that I came across a BBC news report on the MS MIST (HSCT) trial, leading to further research on whether it could be the treatment for me and how I could access it.
In case anyone else is starting this journey or for anyone who is interested, here are some of the sources of information and support I have used.
In the UK, there are several organisations providing information and support for those with MS, their families and friends. Perhaps the most well known of these is the MS Society. The MS Society provides information via their website, has local support groups all over the country, funds research and campaigns on behalf of MSers. The MS Societies in various countries are all linked and receive some of their funding from major drug companies. The information they provide about MS is likely to be very reliable, however, there is concern amongst some MSers that that the Societies may be influenced by their pharmaceutical backers and that people with MS may not always be their first priority. Certainly, it is very evident that the MS Societies do not promote HSCT and some of the information they provide on this is both inaccurate and overly negative.
The MS Trust is another large UK organisation providing information and support for those impacted by MS. The information on their website is reliable and easy to understand and I have also found their telephone helpline to be useful.
MS UK is a slightly smaller UK organisation, with a useful website and helpline.
Shift MS is a patient driven world wide organisation providing an online community of fellow MSers, where all aspects of the disease, treatments and everyday life are discussed.
All of the above have social media presence on Twitter, Facebook and elsewhere and provide news and commentary on new developments in managing MS, living with disability, entitlement to benefits etc.
When researching HSCT, it is not easy to find reliable information and patient experience. The most reliable and supportive resource for me has been the Facebook groups, which are run by HSCT patients.
There is a general world wide HSCT group … HSCT Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases (Facebook group)
And a very helpful UK group – UK HSCT for MS and Autoimmune Diseases (Facebook group) – where UK citizens can get advice and chat with others about accessing treatment here or abroad. There are further groups for the clinics in Russia and Mexico (as well as some others).
AIMS (Autoimmune and Multiple Sclerosis)
There is also a new UK charity, the world’s first that supports people with MS and other autoimmune diseases to access HSCT. The charity was set up by some HSCT patients and their partners and had its official launch last year. They are mainly operating via their Facebook and Twitter pages at the moment and have recently launched their first invitation to those pursuing HSCT to apply for financial support with travel expenses.
These have not been my only sources of information … I have also read numerous research reports and neurology opinion pieces, which have all helped me to feel confident in my decision to pursue HSCT.
A couple of my fellow HSCT UK Facebook group members have recently had their stories reported in the national media.
Colette and Lucy were both successfully treated by the team in Sheffield. You can read more about their stories here … Colette and Lucy.
