39 Well known people with MS

Some of you may be aware that Hollywood actress, Selma Blair, has this week revealed that she was diagnosed with Multiple Sclerosis in August of this year.  Although no one would wish MS on anyone, her open and honest Instagram post on the subject was well received by the MS community. 

It’s a bit depressing to see that one of our trashy news papers is now carrying a grainy video of Selma limping and holding on to her partner when out shopping (MSers are not exhibits in a zoo!)

When I heard the news about Selma, it got me thinking about other people in the public eye who have MS and realised that I really couldn’t think of anyone!  I’m not sure if this means that there are well known people with MS, who are largely successful at keeping their illness hidden; or whether developing MS causes famous people to drop out of the public eye?! 

I decided to do some online research and discovered the following are also diagnosed with MS.

Jack Osborne 

Jack is perhaps the most well known MSer.  He revealed his diagnosis in 2012 and talks about his life with MS via his website youdontknowjackaboutms.com.  There has been a bit of criticism about his approach, as the lifestyle he advocates is only accessible to those with access to funds and who don’t have to work.  Jack also admits to being paid by one of the big pharmaceutical companies making a lot of money providing drug treatments for MS.

Richard Pryor (comedian and actor) 

I had no idea he had MS.  Apparently his declining mobility affected the roles he was able to choose as his disease progressed. 

 

Walter Williams (singer with the O’Jays)

Alan and David Osmond (Father and son in the famous singing family) 

“I may have MS, but MS does not have me,” is Alan’s MS motto.  I’m sure he was devastated when his son was diagnosed 20 years after his own diagnosis.  Both now regularly speak on behalf of the National MS Society (USA). 

Jamie-Lynn Sigler (Actress best known for her role in the Sopranos)

Jamie-Lynn announced her MS diagnosis in 2016 and has talked about how it affects her daily life … “When I walk I have to think about every single step, which is annoying and frustrating.”  (I can relate to this!)

Clive Burr (drummer with Iron Maiden) 

Ronnie Lane (the Small Faces, the Faces)

Don Van Vliet (known as Captain Beefheart)

Sadly I also found listed, numerous athletes, football players, hockey and baseball players whose careers were cut short by a diagnosis of MS. 

On another sad note I found that, in the past MSers often died much earlier than they should have (many of them in their 50s).  Thankfully, more is known about the disease and how best to manage it and life expectancy is now just a little below that of the general population.

Despite a lot of digging around online, I found very few well known people in the UK with MS.  I find it very hard to believe there aren’t more – please let me know if you are aware of anyone

There are a few noteable names who are active in the MS world due to having a loved one with the disease.  

JK Rowling 

Joanne’s mother had MS and in fact, died from complications linked to MS at the age of 45.  She has spoken openly about how difficult it was to see her mother’s decline and death at such a young age.  JK has donated a significant amount of money to MS related causes, including giving £10 million to found a clinic, which is named after her mother. 

Scott Mills (BBC Radio DJ and Broadcaster) 

Scott has often spoken in interviews about his mother’s diagnosis and is proactive is seeking to help people understand what living with MS means. He has also been an active spokesperson for the MS Society. 

Felix and Hugo White (The Maccabees)

Both have often spoken about their mother’s diagnosis and how this affected their family.  The Maccabees have also raised funds for MS charities at their gigs and have taken time to meet with young fans living with MS.  

I found a few other names listed but didn’t know of many of them.  I’m sure there are others.

33 BBC Breakfast ~ Friday 19th October 2018

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…

AIMS Facebook Page 

or on Twitter @aimscharity

For those with MS who are interested in HSCT, there is an excellent Facebook group for information and support.

UK HSCT Facebook Group

And YES, I am going to the ball! ????