World MS Day: ‘Finding a support group meant I was no longer alone’
JEMS is a support group run by Jewish Care for people living with Multiple Sclerosis, a neurological condition affecting one in 100,000 people in the UK
Francine Wolfisz is the Features Editor for Jewish News.
Fiona Elias was left feeling terrified when aged just 17 and without warning, she suddenly lost the ability to feel or move her legs.
Baffling doctors with her symptoms, which also included sensitivity to light, exhaustion and memory problems, another decade would pass before the mother-of-two from Edgware was formally diagnosed with Multiple Sclerosis (MS), a chronic neurological condition that affects more than 100,000 people in the UK.
Now Fiona has spoken openly about how the condition impacts her life to coincide with World MS Day, an awareness campaign held on 30 May every year, as well as to highlight the vital work of JEMS, a Jewish Care support group that meets once a month in north London.
Recalling how doctors initially dismissed her symptoms as psychological – even though she was unable to walk and had to eventually leave school – the then-teenager was later told she had chronic fatigue syndrome.
After months of physiotherapy, Fiona gradually regained the ability to walk, but then suffered a relapse while studying in Israel a few years later, resulting in her falling down the stairs.
While Israeli doctors believed she had MS, doctors back home in the UK were more reticent and it was only after the birth of her second daughter in 2016 that she finally received a confirmation.
She said: “It’s been a really long journey to get to that diagnosis.”
The 34-year-old, who is a community programmer for Jewish Care and today still suffers from foot drop and memory issues, said she was appreciative of having others to talk to about her condition.
She said: “JEMS opened up a whole new world for me. When you think of a support group, you think of a place where people sit around and feel sorry for themselves, but JEMS is not like that at all.
“The group is so positive and people share things they have found useful in coping with MS, from claiming benefits and applying for blue badges to discussing diet and new treatments.”
It was while attending JEMS that Fiona first heard about Hematopoietic Stem Cell Transplantation, which is thought to help slow the progression of the disease, and last year launched a £50,000 Go Fund Me campaign to have the treatment in Moscow.
Fiona, who is now awaiting follow-up scans to see if the treatment has helped halt her condition, explained: “While it’s not a cure, the idea is that it stops you getting any worse. I was more scared of what MS would do to my body in the future, than about the treatment.
“I went from having had a relapse to grabbing the bull by the horns and taking control of my future – rather than letting my illness drive my future.”
Sylvie Cronick, who was diagnosed with MS more than 20 years ago, has also found solace in JEMS and now regularly attends with her husband, Jeff.
When she was first diagnosed, Sylvie had been experiencing exhaustion and numbness down the left side of her body.
The now 64-year-old, who lives in Woodside Park, said: “I had absolutely no idea what MS was. I had to go to the library to find out and when I read about it I was devastated.
“My children were still very young and I was working, as well as looking after the house, my husband, and everything else. I was supermum, but now I was left wondering what the future would bring.”
Having retired early on medical grounds, Sylvie was seeking out a support group as she struggled to overcome the shock of her diagnosis.
She added: “I went through dark days and thought that maybe speaking to others would help me.
“To meet people who had exactly the same as me was a big help. I felt I was not alone. Sometimes it’s easier to talk to someone you don’t know, rather than your husband and children, and you can learn from each other about how best to manage.”
Meanwhile, John Stillitz, 68, who was diagnosed 30 years ago, described JEMS as “an extraordinary group” and was inspired to help others by volunteering with the MS Society.
He said: “JEMS is an extraordinary group to be with. I’ve reconnected with people I haven’t seen for years and our lives have crossed again through the group.
“We encourage each other to be more optimistic about the future. Everyone seems to leave for home feeling so much better than when they arrived.”
For more information about Jewish Care’s JEMS group, contact Jewish Care Direct on 020 8922 2222 or helpline@jcare.org
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