By Nick Barry
FRAMINGHAM – Sometimes, medical research on diseases and finding cures is focused on the well-known diseases like cancer and heart disease. Rare and less know diseases and disorders suffer in silence. Glenda Thomas is hoping to change that.
A Framingham resident and a member of the Framingham Council on Aging, Thomas was recently appointed to the newly-created Massachusetts Rare Disease Advisory Council, which will look over healthcare legislation to make sure that people with rare diseases needs are met.
Thomas is not just an individual struggling with myasthenia gravis (MG), she is an advocate for those with rare diseases.
Myasthenia gravis is a chronic autoimmune and neuromuscular disease that destroys nerve receptors on muscle tissue, which hinders a person’s ability to move certain muscles. If left untreated, it can cause extreme muscular weakness and can even affect a person’s ability to do basic things like breathe, walk, or see.
Thomas is the New England support group leader of the Myasthenia Gravis Foundation of America (MGFA). In addition to her work with the MGFA, she is also involved with the Myasthenia Gravis Patient Advocacy Council and four pharmaceutical companies that are working on treating the disease.
When Thomas was first diagnosed with MG, she was very afraid and didn’t think that she was ever going to get better.
“I didn’t hear the doctor when he said that I had an illness that wasn’t treatable, because when someone tells that it’s not curable, you know, I thought that I was going to die,” she said.
However, after joining a support group and being prescribed a particular drug that was found to mitigate her symptoms, she began to feel more hopeful.
“Through the support group, I found that with the right treatment, I could return to being fully active and having a normal life,” she told SOURCE.
As someone living someone with a rare disease, Thomas firmly believes that patients being able to tell their stories is extremely important, because it helps the public to understand how these rare diseases should be properly treated and clear up misconceptions about them.
“I was on a support group call yesterday and the physical therapist that was there was saying that people don’t tend to lose their core muscle strength,” she said. “And I said but I did. I do. I used to contort my body in positions just to walk that weren’t natural” she said.
Thomas said treatment of MG can vary from person to person.
“We refer to it as the snowflake disease,” she said.
But sometimes, people don’t even know that they have an illness like MG at all. “A lot of times, people go undiagnosed or misdiagnosed with this illness,” she said. “And because of that, they are not necessarily getting the proper treatment.”
Thomas, who also serves on the Framingham Council on Aging, also believes that raising awareness about MG and other rare diseases will help those that have them get diagnosed and treated.
“From a rare disease standpoint, a lot of times we fall out of the formulas that the hospitals, and insurance companies, and the government look at because their looking at the mass. And so the rare disease community can be impacted by not being included,” she said.
This lack of focus on rare diseases can have real consequences, as many people that have them cannot afford treatment because it is not covered by their health insurance. And the communities that are hit it by the hardest are rural areas.
“It’s just too costly,” Ms. Thomas explained. “So therefore, people can’t get treatments in their communities. I know people in the MG community that talk about traveling a couple of hours to get to a medical facility so that they can get the proper treatment.”
But no matter how much experience and knowledge she has gained through support groups, research groups, or state government, living with MG has always been the thing that has taught her the most about rare diseases.
“I had never even heard of it until I was diagnosed with it,” she said.
Thomas hopes the new council will help solve these issues for people like herself and others. “When people go untreated, because they are misdiagnosed, that’s where you want to educate and increase the awareness.”
Thomas’s appointment to the Rare Disease Council was praised by her local representatives.
“I am proud that my constituent Glenda Thomas has been selected to join the Rare Disease Advisory Council,” said Massachusetts Senate President Karen E. Spilka. “Glenda’s experiences as a patient, as a caregiver, and as a public advocate all speak to her ability to bridge gaps between healthcare policy and those who are navigating our healthcare system. Breaking down barriers to care for a more integrated approach to healthcare is a
longstanding priority of mine, and I look forward to seeing Glenda’s work on the council.”
“I am very excited for and proud of my Framingham constituent Glenda Thomas for being selected to become a part of the Rare Disease Advisory Council. Her caring work in healthcare and advocacy have been appropriately recognized as she is the perfect candidate for this role. I look forward to seeing her proudly represent Framingham and serving Massachusetts with her work on the council,” said Representative Jack Patrick Lewis.
This advisory council will give rare disease patients, families, caregivers, providers, and other stakeholders an opportunity to make formal proposals to the state on how to improve public policy for people across the community. The Massachusetts State Legislature, as well as federal and local policy makers, will look to members of the Council to help create and design health care legislation while informing and verifying pending policy.
Thomas, who was diagnosed with myasthenia gravis in 2013, and through sheer determination and drive, became a strong and active volunteer with the MGFA where she served the MG community in a number of leadership capacities. Her experience as an MG support group leader, keynote speaker, fundraiser, conference planner and patient advocate makes her uniquely qualified for the Rare Disease Advisory Council.
As a new member, Thomas will provide guidance and assistance to local, state, and federal-level legislators and policy makers to ensure patient perspectives and needs are central to policy changes that impact and affect solutions for rare disease.
Nicholas “Nick” Barry is a student at Westfield State University but lives in Framingham. Nick is an English Major that is focusing on writing, but he is currently finishing up his second major in Ethnic Studies. Although he is unsure of what the future will hold, he wants to do work related to journalism or solving important social issues. This is his second time interning with SOURCE.