‘I’ve had Multiple Sclerosis for over 30 years – yet I still have so many unanswered questions’

Like many others their age, Fiona French, 63, and her husband, John, are approaching retirement from busy careers.
They like to travel and enjoy spending weekends away camping and going for walks with their dog, Archie. Fiona is active and plays golf twice a week with friends. She also has Multiple Sclerosis (MS).
Fiona has managed her condition with little treatment for more than three decades – but many with her condition are not so fortunate. Indeed, her sister was diagnosed with MS around the same time, with a very different outcome.
Now, Fiona is joining Our Future Health to help scientists understand the role genetics plays in our health. She wants to put a stop to the debilitating impact of MS for others in the future.
Early signs missed

Fiona was just 24 years old when she began experiencing double vision.
“I’d been to the hairdressers and assumed it was a result of having my head backwards in the sink while my hair was washed,” says Fiona. “By the time I got to my doctor, the double vision had gone. The doctor didn’t say much at my appointment, so I thought nothing more of it.”
Eight years later Fiona’s double vision returned, and this time she had other symptoms, including pain in her arms.
“I ended up seeing a neurologist. They looked at my medical notes from eight years prior they read that MS had been suspected, but nothing had been said to me.
“I was officially diagnosed in my early 30s. I knew things had been going on in my body for a while by that time, so—in a way—to finally have a name for it felt like a relief.
“I was diagnosed just before my sister, Kim, though she was three years older and had been experiencing symptoms for about the same amount of time as me. Kim’s symptoms included swelling in her eyes and problems with her skin and bladder.”
MS is a neurological condition that affects the nerves. It occurs when the immune system isn’t functioning as it should. While a healthy immune system protects you by fighting off infection, MS causes it to mistakenly attack the nerves.
It’s not known for certain what causes MS, though scientists believe a mix of factors can act as triggers. Studies support the idea that a trigger in the environment may cause MS in certain people who have a specific genetic composition.
There’s currently no cure for MS, but there are treatments to help manage the condition.
‘Things began to go downhill rapidly’
There are several different types of MS. Fiona’s is classed as benign. She has mild and very rare attacks, separated by long periods with no symptoms.
Kim was diagnosed with relapsing-remitting MS, which affects roughly 85% of people with the condition. It is marked by more frequent relapses. After each relapse, the body can find it harder to repair the damage relapse brings. This means disability is likely to gradually worsen, especially without treatment.
“Over the years, I’ve been offered various treatments, but because I feel quite well, my neurologist has helped me to manage my MS without much intervention.
“My sister had so many treatments that I forget exactly what they were. I know she had regular injections, but it reached the point where these didn’t make much difference.
“In the last couple of years, things began to go downhill rapidly for Kim. She lost her hearing, she couldn’t walk, she lost a lot of weight.
“Kim survived so much. What she overcame was amazing. But it was clear she was deteriorating year on year. She ended up getting pneumonia and died of a blood clot on her lungs in 2019 when she was 60. Losing her was very hard, and I’m thankful my parents didn’t have to witness this.”
‘It always struck me as odd that we both had MS’

When Fiona and Kim were first diagnosed with MS, they were told it wasn’t genetic. But when Fiona joined the MS Society 14 years ago, she was amazed to meet many members of the same families, all with the condition.
“For my sister and I, there’d been no one in our family before us who’d been diagnosed with MS, but it had always struck me as odd that we both had it.
“Kim had children – a daughter and a son, but thankfully neither have symptoms. I hope whatever was in us that led to our MS isn’t passed on.
“My parents always felt some guilt that they had given us MS, which possibly was in their genes. But that was a factor that was out of their control, and we never once blamed them.”
Supporting lifesaving discoveries
Professor Michael Cook, Executive Director of Science at Our Future Health, says volunteers like Fiona are crucial to our programme. “Our volunteers’ information will enable researchers to make insights and advances into conditions such as MS.
“So far, almost 2,000 volunteers who have MS have joined Our Future Health. We also have over 2 million consented volunteers, which means we can expect 200 people to be diagnosed with MS each year and we can also expect 200 newly diagnosed cases each year.
“The combined altruistic power of our volunteers will enable insights into a variety of important aspects of MS. Researchers can use our volunteers’ information to study the causes of the condition, search for biomarkers that predict risk and enable earlier diagnosis and better understand factors that affect prognosis and response to treatment. Researchers will also be able to offer our volunteers the chance to take part in follow-on studies and trials.
“Our custom genotype array captures up-to-date lists of disease-associated gene variants, including extensive assessment of human leukocyte antigen (HLA) genes that are associated with MS.
“The rich data our volunteers provide will facilitate new insights into MS, helping improve diagnosis and care for all MS patients.”

In time, Fiona is hopeful that Our Future Health will help medical researchers find out if there are specific genes that can lead to MS and other diseases that are often passed through families.
“If future generations can know their genetic risk sooner, they can get tested earlier. Even if there are no preventative measures available, they can at least start treatments sooner and stop things like MS in its tracks before damage is done.
“I’d also like to find out more about why my MS is so different from my sister’s. Why am I relatively fine today, but she’s no longer here? What was the difference between us? I do feel both grateful and sad that we had such different progression of this disease.
“Good luck Our Future Health – I feel sure that given time this programme will help to prevent, detect and treat many conditions and diseases, and enable people to be proactive when it comes to their health. That would be a huge step forward for us all.”
About Volunteer Voices
Volunteer Voices tell the stories of people who take part in our research programme. Often, they have experienced the devastating effects of a disease.
Joining Our Future Health does not help our volunteers in their battle with disease. They take part because they want to help improve healthcare for others in the future.

Let’s prevent disease together
By volunteering for Our Future Health, you can help health researchers discover new ways to prevent, detect and treat common conditions such as diabetes, cancer, heart disease, stroke and Alzheimer’s.