Patient Advocate Spotlight: Yvonne deSousa

4.11.18

4.11.18

Yvonne deSousa discovered the power of humor soon after she was diagnosed with multiple sclerosis (MS) eight years ago.

“There’s quite a bit of medical research that says laughing is good for you,” deSousa explains. “Why don’t we talk about this more? Having MS isn’t all roses. I have breakdowns, and people need to have them. I’m not trying to minimize hardships, but when you can find that humor moment, it’s a help.”

MS is a chronic condition in which the body’s central nervous system disrupts the information flow between the brain and the rest of the body. While the cause of MS remains unknown, scientists have found that environmental, genetic and other factors can increase the likelihood of developing the disease. Symptoms can vary, with some patients experiencing numbness, weakness or tingling in certain areas of the body, partial or complete loss of vision, tremors, slurred speech and fatigue.

For deSousa, she began experiencing the “MS hug,” a symptom where a patient feels pain or pressure in their waist, torso or neck. She started to have cognitive trouble, which affected her work and, soon after, she began to feel numbness and tingling.

“I was diagnosed with MS after my doctor recommended an MRI,” deSousa remembers. “I received my test results a week before Christmas. I ended up having my first appointment the next day and was running late. I was speeding to the appointment and a police officer pulled me over and asked why I was driving over the speed limit. I was so nervous I told the truth – that I was late going to my first doctor’s appointment after being diagnosed with MS the day before. I apologized for speeding. His demeanor immediately changed – he looked like he was about to give me a hug. I did not end up with a speeding ticket.”

Finding the humor in having a chronic disease helps deSousa, who lives in Massachusetts, spread awareness in a unique and relatable manner. After her diagnosis, deSousa started a blog, emphasizing the role that humor and laughing play in her life and her disease.

“So many ridiculous things have happened. I wouldn’t know how to cope with it if I didn’t learn how to laugh,” says deSousa. “My insurance company assigned an advocate to me. I used her as an informational resource, but when my monthly bill increased from $365 to $2,600, she told me she can’t help me with costs, only information like how to deal with stress related to the disease. I told her these medical bills were stressing me out!”

She began her blog when she started experiencing cognitive issues, fearing she could be in the early stages of Alzheimer’s.

“All these crazy things started happening, and I was worried I wasn’t going to remember so I started writing,” explains deSousa. “I had to stop working and I joined a writing group nearby. I was in contact with an agent, and she recommended I start a blog. It’s still going seven years later, and I published my book about living with MS in February 2014.”

Supporting patients like deSousa is central to our mission at the Chronic Disease Coalition. Join now and learn more about how you can help advocate for patients.