I watched my uncle battle MS for 25 years
The TV medic’s beloved uncle was a talented veterinary surgeon who had the disease diagnosed at the age of 30, he tells HANNAH BRITT
WHEN Dr Christian Jessen was a youngster he was aware that his beloved uncle Volker, a talented veterinary surgeon, tired easily and often suffered terrible muscle spasms that would leave him doubled up in pain.
But it was many years before the TV medic, best known for his no- nonsense advice on Channel 4’ s Embarrassing Bodies and Supersize vs Superskinny, understood the true nature of his uncle’s illness.
Volker Jessen was only 30 when multiple sclerosis ( MS) was diagnosed and he battled the condition for 25 years until his death in 2003 when Christian was at university.
“To me he was just my uncle, the man who never forgot a birthday and who gave me a grey African parrot as a pet when I was a little boy,” says Christian, 38, who lives in central London with his partner Rogerio Barreto.
Volker started showing signs of MS in his mid- 20s when he was beginning his veterinary career and specialising in horses.
“He first noticed his MS symptoms when he wasn’t able to perform surgery as normal. His colleagues saw that his stitching was becoming erratic, post- surgery. It was a little bit messy and he was missing areas,” says Christian.
“He was known for being such a good vet so this was really devastating for him. All those years he had spent training and dedicating himself to his work. It was a terribly difficult time.”
MS is an incredibly complex chronic condition in which the body attacks myelin, the coating around nerve linings in the brain and spinal cord, causing problems with muscle movement, balance and vision.
There are about 100,000 people in the UK with MS and while signs tend to appear in 20 to 40- year- olds, it can strike at any age.
As in Volker’s case, often the first noticeable symptoms of MS are vision problems. Other signs include a lack of co- ordination, extreme tiredness, numbness and tingling, problems with mobility and balance and muscle weakness and tightness.
“Volker had problems operating and the fi rst thing his colleagues assumed was that he was drinking on the job,” says Christian.
“Yet when he went to the doctor lead poisoning was initially diagnosed, an incorrect although not entirely unreasonable assumption as Volker lived in a house with lead piping.
“In the end it was actually my uncle himself who happened upon his own diagnosis. My father told me that, as a medic, he didn’t think lead poisoning quite fi tted his symptoms. He did his own research, went off to the library to look it up and came to the conclusion that it may well be MS and that’s when he started consulting specialists.”
VOLKER was finally diagnosed with MS in 1978 at the age of 30. Christian puts his uncle’s wait for confi rmation down to much less being known about MS back then when it was considered a mysterious and baffling condition with a very poor prognosis.
The only treatments available were steroids, muscle relaxants and painkillers.
We know now that the central nervous system controls all your body’s actions and in those with MS the coating around the nerve fibres that carry messages to and from your brain is damaged.
This damage is caused by tiny lesions which can be detected and monitored with scans. Yet decades ago these tests were expensive and less accurate in detecting the early stages of the disease.
“The diagnosis of MS is complicated as you need to see progression and changes in those scans over time. It’s not as simple as taking a blood test and getting either a positive or negative diagnosis,” says Christian.
“It does take time, which is frustrating. However the imaging has got much better at picking up smaller lesions earlier.”
Yet although detection has greatly improved, Christian explains that there is still much that is unknown about MS.
“We still don’t know exactly what causes it,” he says. “We know it’s an autoimmune disease that affects the coverings of the nerves but we don’t really know what triggers it.”
MS itself is not fatal but it can lead to complications such as chest infections owing to an impaired immune system.
“Luckily in my uncle’s case it never really affected his vision too badly but it did affect his work as his main problem was coordination. Later on he suffered from very bad muscle spasms and he was confi ned to a wheelchair,” explains Christian. “He couldn’t really walk, move or do very much at all. It affected his whole body, all his muscles, quite badly.”
Volker battled his condition for 25 years until he died at the age of 55 from pneumonia and generalised sepsis, following a chest infection. “With life expectancy so much higher these days, 55 really is very young to die,” says Christian.
The doctor has never spoken about his family’s heartbreak before but when he was asked to back a national campaign called 1MSg, “one message”, funded by Biogen, to encourage more people with MS to seek specialist help to improve their quality of life, he decided to share Volker’s story.
BUT despite the fact that new treatments, including drugs tailored to each specific type of the condition, and physiotherapy, diet and alternative therapies such as acupuncture are available, a study by the MS Trust reveals a fifth of sufferers have seen neither an MS- specialist nurse nor a neurologist in the past year.
“It is vital to break any stigma surrounding MS, it is simply not the death sentence once thought,” says Christian. “Many with the disease live productive, happy lives if they manage their MS well. Of course I’m glad we’re making progress, it really wasn’t a very nice condition at the time of my uncle’s diagnosis. So to see new treatments coming forward is amazing.”
He adds: “I was pretty young at the time and the medical side of it didn’t come into it for me. To me he was just my uncle who had medical and mobility issues.
“Children are very accepting. Yet now I’m a doctor, of course I understand what was happening to him and that is hard to think about.
“At the time he had it diagnosed he would have finished university, he was working and things were going really well for him. So to get a diagnosis like that must have come as a real blow.
“I hope that this campaign helps people to realise that MS is not the life sentence it once was and that there are so many options now.
“Visit your GP and talk about it. There are lots of medications but they’ll only work if you take them.”
For more information on the campaign visit 1msg. co. uk