Yesterday was an exciting day in the UK world of MS/HSCT, when BBC Breakfast did a feature on HSCT. The item featured Roy Palmer and his partner, Helen talking about the amazing life changing improvements he has experienced following HSCT. Roy was in a wheel chair for 10 years and is now walking again!
HSCT works!! 🚶🏽♂️
Roy is a member of the online support group that I am also part of and is living proof that HSCT can help those who are older (Sorry Roy!), have long established MS and who are no longer mobile. Like most of us, Roy had to fight to get HSCT and prove that he met the strict criteria required for NHS treatment. It was wonderful to see Roy so happy and positive on the BBC Breakfast sofa!
Whenever the BBC feature any discussion about MS, they always wheel out an “expert” from the MS Society and this is where many of us begin to feel frustrated at the slow progress in making HSCT more widely available to MSers who want and need it.
The MS Society does some excellent work in providing information on the disease and on current mainstream treatments. They also facilitate many groups and activities at a local level, which is a huge support to many. But they are not only slow to promote HSCT, but actually continue to provide untrue information. HSCT is not an experimental treatment and is not only appropriate for a very small number of those with MS. There are too many success stories from patients with diverse presentation of the disease for them to continue saying this …yet they do.
Worldwide MS Societies are all connected and are partly funded by the big pharmaceutical companies, who make millions from the drugs currently used to treat those with MS. I guess if we all had HSCT, hardly anyone would need those drugs anymore and their funding stream would end. I don’t know if this is the reason for their reluctance to get behind HSCT, but find it hard to accept that an organisation that exists to support those with the disease, does not always seem to have the interests of patients at the forefront.
As well as fighting for my own treatment, I find myself wanting to fight to help others. So yesterday, along with others I found myself posting on BBC articles about the item, directing people to more reliable sources of information.
The UK now has a new charity dedicated to supporting those with MS (and other autoimmune diseases) to access HSCT. The charity was formed by a group of MS Warriors and partners of MS Warriors who have had HSCT treatment and want to make a difference to others.
You can find out more about their work here…
or on Twitter @aimscharity
For those with MS who are interested in HSCT, there is an excellent Facebook group for information and support.
And YES, I am going to the ball! 💃🏼🕺🏻