‘Woman made to feel like she was ‘making up MS’ shares story as more young people are diagnosed’

Credit: MS Society

A woman from Oxfordshire, who was diagnosed with Multiple Sclerosis, has said some doctors made her feel as though she was "making it up" when she came forward with symptoms in her early 20s.

Sasha Braun, who's 25 and from South Oxfordshire, was diagnosed with relapsing remitting MS in 2018.

The trainee vicar is sharing her story as new research shows as many as one in five people diagnosed with MS are under 30.

The process of diagnosing someone with MS can be complex Credit: PA Images

Sasha's condition means she has to deal with chronic fatigue, pain and problems with cognition.

But her form of the diseases means she's prone to flare ups where her symptoms will get drastically worse - in one case leaving her blind in one eye.

Sasha said she has to live with a "constant fear" of her next relapse, "which is exhausting."

"Knowing your independence could be taken away at any minute, they're the hardest things to deal with."

Sasha also said she had problems getting a diagnosis because she was so young.

"The first neurologist I saw alluded to me making my symptoms up," she said.

"That was pretty damaging, so when the new neurologist believed me I just felt relief to begin with - I'd had months knowing what was wrong and everything pointing towards it being MS.

"I didn't know what it meant for my future, what my life would look like now, and if I could still have a family or a career."

She said the future is "so unknown" because it's impossible to say where her illness will be in ten years time.

But she is continuing her training as a vicar.

"It's made me think about what I really do want...I'd love to be a hospital chaplain.

"My faith is what keeps me going when things are hard."

Data analysed by the MS Society estimates that 18% of people diagnosed with MS are aged 30 or under – equating to more than 1,250 people in the last year.

This 18% figure compares to a previous estimate of 12%.

It is thought that improved data collection and better diagnosis at earlier stages of the disease may account for the rise in the number of cases among younger age groups.

Around 85% of people with MS are diagnosed with the relapsing form, where symptoms come in sudden attacks then fade.

Two in three of these people go on to develop secondary progressive MS, where there is no remission and people become increasingly disabled.

Dr Emma Gray, assistant director of research at the MS Society, said: “Today, most people will first experience MS symptoms in their 20s and 30s, when they’re working on their career, or perhaps thinking about starting a family.

“The condition is unpredictable and different for everyone, and that can make it hard to plan for the future.

“There are now over a dozen licensed treatments for people with the relapsing form of MS, and some emerging for early active progressive MS – but there is nothing to stop you becoming more disabled as your condition advances.

“Thankfully, we have never been closer to stopping MS, and with the discoveries being made right now, we believe treatments that slow or stop disability progression are a very real prospect.”

The MS Society’s Stop MS Appeal is raising £100 million to find new treatments for MS.

By 2025, the charity hopes to be in the final stages of testing a range of treatments for everyone with the condition.