Today is World MS Day and with roughly 2.5 million people around the world suffering from the debilitating neurological disease, odds are someone you know may have it.
Multiple sclerosis (MS) triggers the immune system to attack and eat away at the protective layer covering nerve fibers in the brain, spinal cord, and optic nerves of the person who is suffering from the disease, according to Medical Daily, it is also an illness that a lot of people keep hidden.
One person who has kept MS secret for 15 years is Jamie-Lynn Sigler, the actress who played Tony Soprano’s daughter on the TV show The Sopranos, and she knows many other sufferers stay in the closet about their disease.
Despite what people think, MS is not a fatal disease, but it is a debilitating one that affects those who suffer from it in different ways. For Sigler, MS affects the use of her right side and she is now unable to run.
“I can’t run. It’s so hard for me. I’m not trying to sensationalize this at all, but the very last time I can remember running was the final scene of The Sopranos.”
Sigler is now married to baseballer Cutter Dykstra and the couple have a 2-year-old son Beau. The actress said being a parent with MS is hard work especially when the disease is kept a secret, according to the Daily Mail.
“It’s a lot. It’s a lot for any mom. I do my best. I manage. If I know I’m going to take him [Beau] to the park, I usually take him to a park that’s enclosed so that I just don’t have to worry about him running off. I do everything that any other mom does.”
Sigler only announced this year that she has MS and has not yet told her son about her condition, but she knows she will have to one day.
“I think when the time comes and when he needs to know, I’m not gonna use the word ‘sick’ because I think that instills fear in a child.”
The Entourage actress says she has faith in medicine and hopes that openly discussing the disease will help other sufferers talk about it and will create a push for more research.
Another person who is suffering from MS and only just beginning to share her story is author Danielle Spinks. Spinks said she has the type of MS that can be hidden. She is not paralyzed or in a wheelchair and is a fit and active woman.
“The relapsing-remitting version that I have is possible to keep hidden. You can’t see MS by looking at me. You would see I wear glasses – the black-rimmed professional kind. If you were discerning, you might see that my right eyelid is heavier than the left – that’s the result of optic neuritis that left me blind for two weeks in the late 1990’s,” she said.
Spinks was diagnosed with MS 18 years ago and chose whom she was going to “come out” to carefully, according to Daily Life.
“It’s not that I don’t accept that I have MS, it’s just that I don’t define myself by it and I don’t want anyone else to either.”
“A few years ago I was introduced to a distant relative who had obviously been told of my condition. He looked at me with amazement and said, ‘You look so well, considering.’ He then asked: ‘How long will it be till you’re in a wheelchair?'” she said.
Comments like this are not uncommon for people who suffer MS and is the main reason people keep quite about it. The website ThisIsMS allows users to discuss MS and speak about why they keep their illness hidden. The most common reason is professional.
Two hundred people are diagnosed with MS in America each year and there is currently no cure or known cause as to why people get the disease. There are currently 13 FDA-approved drugs that treat some of the long-term effects of MS and the severity and frequency of relapse symptoms including vision loss, pain, fatigue, depression, forgetfulness, and impaired coordination.
Spinks said the stigma that surrounds the disease is why she does not tell people she has it and said a lot of other sufferers do the same.
“Why wouldn’t you keep it secret when you get a whole collection of flawed worst-case perceptions transferred onto you?”
Research is still needed, but according to the National Multiple Sclerosis Society, MS can be triggered in people who eat high-fat diets, have a vitamin D-deficiency, or smoke cigarettes. At the other end of the scale, symptoms can be managed by acupuncture, meditation, massage, yoga, and dietary supplements, such as vitamin D, C, and B. Whether the patient is using alternative or traditional medicine, one goal is clear: independence for the sufferer.
The hashtag #strongerthanMS has been trending on social media on World MS Day and people are sharing their stories. One key theme from the trending topic is that you never know who is suffering from MS or any other disease, and that people need help, need to feel confident about talking about it, and need to spread awareness.
[Photo by Jordan Strauss/AP]