I had seen John before but never met him. Iris, my friend back in Brussels, was very close to John. She truly liked him, which explains why I saw her crying a few times at home.
One day Iris could not keep the secret anymore: “John might have MS,” she told me.
Not knowing whether you have multiple sclerosis must be unbearable. From that day on, whenever I saw John drunk at our traineeship evenings I better understood his situation, rather than just thinking he was another Briton with a taste for drink.
When John first noticed something was going wrong with his body, it was the start of a nightmare. This dynamic, and frankly gorgeous, young man underwent several medical exams with different doctors.
The only symptoms he complained of were fatigue, weakness, poor concentration and an unstable mood. I tried to be positive and told Iris: “That could be any other disease.” But doctors told John that it was likely he had MS.
There is no cure for multiple sclerosis, a disease that affects millions of people worldwide. In MS, the patient’s own immune system attacks the myelin sheath, a layer of cells that insulate the nerve fibres carrying impulses from the brain to the muscles. When the myelin is degraded the insulation breaks down and those impulses are disrupted.
The disease progresses gradually, over years and leaves patients wheelchair-bound. For this reason it is known as a degenerative disease.
Degenerative diseases gradually rob a person of their mobility, so independence quickly becomes a priority for people with this diagnosis.
But suit-clad policy-makers seem to have little time to consider the daily routine of such patients. Now, of course spending cuts are poised to hit crucial health services – services that to politicians mean money but to patients mean a matter of life or death.
A recent report in the Guardian described the fears of one MS patient who stands to lose her monthly £400 disability living allowance. “Life is not worth living,” she said.
She may not be alone in feeling that way. Millions of people who had the misfortune of being diagnosed with a degenerative disease depend on this money. They need to maintain a positive outlook on life or their problems can quickly overwhelm them.
And one should not forget those who have a double misfortune: being diagnosed with a degenerative disease in countries where disability allowances do not even exist. These are people who can only depend on their family and friends, if at all.
Call me naïve if you wish, but I wonder why health increasingly seems to play second fiddle to economic concerns. If only 100,000 people in the UK are affected by multiple sclerosis, why does the Government have to cut the money that improves the life of these patients?
Yet whenever there is a human story behind a medical term for a disease, people start thinking differently.
Last year, Harry Potter author JK Rowling donated £10 million to set up a clinic for research into treatments for MS. The illness had killed her mother at the age of 45.
A few months later, further good news came to the media as scientists showed that the damage caused to nerve cells in MS could be reversed by activating stem cells in the body. The study has identified a means by which the brain’s own stem cells can be encouraged to repair damage.
In fact, “therapies that repair damage have been the missing link in treating multiple sclerosis,” according to Prof Robin Franklin who led the research.
The findings brought a glimmer of hope to researchers, patients and those who have been fighting for more investment in the disease. The Multiple Sclerosis Society said this was one of the most exciting developments in recent years: “It’s hard to put into words how revolutionary this discovery could be and how critical it is to continue research into MS.
“We’re delighted to have funded the first stage of this work and we’re now looking into funding it further.”
Meanwhile, John is still unsure about his condition. Doctors both in Belgium and the UK cannot tell whether he has MS or not. The doubt itself is killing his youth.
To protect the people mentioned in this story, their names have been changed.
Picture courtesy of U.S. Brookhaven National Laboratory
Huang, J., Jarjour, A., Oumesmar, B., Kerninon, C., Williams, A., Krezel, W., Kagechika, H., Bauer, J., Zhao, C., Evercooren, A., Chambon, P., ffrench-Constant, C., & Franklin, R. (2010). Retinoid X receptor gamma signaling accelerates CNS remyelination Nature Neuroscience, 14 (1), 45-53 DOI: 10.1038/nn.2702
What people are saying