Multiple sclerosis (MS) is a life-threatening and disabling disease for which there is currently no cure. But it can also feel like an invisible disease. While MS patients experience symptoms that are physically and mentally debilitating, it is also common for patients to be faced with a lack of understanding or knowledge about the disease from others. This can lead to uncomfortable situations in which others — even family members or friends — do not understand why MS patients often have problems dealing with the disease and its symptoms.
This very real problem — multiple sclerosis being an invisible illness — will be addressed at the 2016 Annual Meeting of the Consortium of Multiple Sclerosis Centers (#CMSC16) by the researcher Patricia Pagnotta, MSN, ARNP, CNRN, MSCN. She will be giving a presentation titled “Invisible Symptoms: Fatigue and Cognitive Dysfunction,” on June 3 as part of the annual meeting June 1-4 in Baltimore, Maryland.
Pagnotta has been dedicated to the topic for years. At the 2014 CMSC annual meeting, she discussed fatigue, depression and cognitive dysfunction as invisible symptoms of multiple sclerosis, among other subjects. The researcher said at the time that cognitive dysfunction impacts between 45 and 70 percent of all patients diagnosed with MS. It can occur early in the disease, and it is often underrecognized, underdiagnosed, misdiagnosed, and in some cases mistaken as depression.
Cognitive dysfunction and physical disability associated with multiple sclerosis are not related to one another, but both can be invisible to the naked eye. While patients know how they feel and the symptoms they experience, other people may sometimes fail to understand or even question it.
An example of this is the case of Justine Van Den Borne, who last year found an aggressive note on her car that was parked in a disabled parking space — with a legal disabled parking permit. The MS patient has publicly shared the angry note that was attached to her windshield at the Mitcham Shopping Centre in Melbourne, Australia. The note from an anonymous person read: “Did you forget your wheelchair???”
“To [the] person that left this on my car last week at Mitcham Shopping Centre – I was diagnosed with multiple sclerosis when I was 35,” explained the 41-year-old MS patient. “Not just MS but the worst one that never goes away and is slowly crippling my life. My kids have had to deal with things that kids shouldn’t ever have to deal with and all of our futures are forever changed. On the day you saw me I was having a good day. I was walking with my daughter unaided having a nice day.”
“Thank you for ruining that,” Van Den Borne added. “You made me feel like people were looking at me, the exact way I feel when I can’t walk properly. I am sick of people like yourself abusing me on my good days for using a facility I am entitled to. A disability doesn’t always mean a person has to be wheelchair-bound, but lucky for you I one day will be.
“Right now my focus is to walk into my best friend’s wedding next September and not have to be pushed. I will be 42. Before you ruin another person’s day remember you don’t know everything and just because you can’t see it it doesn’t mean a person isn’t struggling to put one foot in front of the other,” Van Den Borne wrote.
This year, Multiple Sclerosis News Today will offer expanded coverage of the 2016 Annual Meeting of the Consortium of Multiple Sclerosis Centers June 1-4 in Baltimore. Our five-person news team will publish feature articles on the presentations, exclusive video interviews from the convention floor with leading MS researchers and professionals, and live social media coverage and live streaming.
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