AuthorRachel Horne

MSVirtual2020 #SoWhite

Last week, I sat down and watched this year’s virtual joint ECTRIMS/ACTRIMS Congress – the world’s largest annual conference dedicated to multiple sclerosis. Over three days, nearly two hundred leading MS clinicians, scientists and health care professionals appeared on the screen presenting the latest research and treatment on the disease. Most of them, I noticed, were White. Not...

The Kingdom of the Sick

By Rachel Horne For all of us with multiple sclerosis, our story is the same.  One day we got sick and we never got better. Instead we were plunged into the strange hinterland of chronic illness – located between a headache and terminal cancer – where our disease won’t kill us, but it will never go away; where we will undergo treatments, but never a cure – and where we...

The human side of MS and Research: A short film

By Rachel Horne        The invitation came a year ago from University College London Hospitals. Would I be interested in being part of a film that looked at how research impacts people with MS? Why not? I’d been in a few of these over the years. A morning filming, a few questions posed to the experts, some vigorous on-camera nodding – and by the afternoon I’d be on my way. Then I looked at...

MS and Dogs

Dogs are being trained to sniff out Covid-19. But for many with MS, they’re already proven live-savers… By Rachel Horne There are two things which changed Janette Coombs life. One was a faceless, degenerative disease which raced through her body – stripping her of her mobility, her self-confidence and her independence. And the other? He has soft brown eyes, four legs and never leaves her...

MSers and COVID-19: trying to find clarity in the confusion

By Rachel Horne Recently a great post on Shift.ms – the social network for people with multiple sclerosis – caught my eye. Titled “We’ve got this…” the writer “Clare80” sums up how people with MS may be better at dealing with the coronavirus outbreak – compared to those around us. Because we live with the disease, we are used to: being stuck in limbo and living with uncertainty...

Crip Camp: the Obamas documentary on disability

By Rachel Horne I know this blog has lately been filled with updates on COVID-19 and MS – and rightly so. However, if you are at home – and looking for something hopeful to watch during these overwhelming times – try this new award-winning documentary Crip Camp: A Disability Revolution – which was executive produced by Barack and Michelle Obama. The documentary focuses on...

MS world loses a true supporter

It is with great sadness I write that Chuck Barancik who – with his wife Margery – set up the Barancik Prize for Innovation in MS Research was killed on Wednesday in a car collision in Florida.  Earlier this year, I interviewed both him and Margery about the Barancik Prize – its inspiration and its goals. Though their philanthropic interests were wide, the promotion of MS...

Ich Klage An

When the Nazis used MS to support killing the disabled By Rachel Horne More than seventy years after the end of WWII, about forty Nazi propaganda films still remain banned by the Allies in Germany – due to their incendiary nature. One of the most notorious of these is Ich Klage An or I Accuse, which tells the story of a young woman who gets multiple sclerosis and convinces her husband to...

“Useless Lives” – the Dark Story of MS and the Nazis

At the start of the UK Disability History Month, let us not forget… By Rachel Horne I never thought I would end up writing the words Nazi and multiple sclerosis in the same sentence.  Then I went to Auschwitz.  After passing under the infamous Arbeit Macht Frei “Work Sets You Free” gate, our group followed the tour guide into Block 5. There inside the dim, low-ceilinged room, I was...

Identity

MS and identity. We know what MS does to us physically – but what about to our self? Receiving a diagnosis of multiple sclerosis is devastating. Full stop. The disease course is varied and unpredictable – and we humans we don’t like uncertainty. There is no cure; medical treatment is limited and the symptoms are wide and diverse. In addition, the onset of MS often occurs in young...

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