- Tallahassee neighbors took steps for the next step in fighting Multiple Sclerosis disease.
- MS diagnoses are becoming more frequent — the National MS Society confirming nearly one million people are living with MS in the United States, more than twice the original estimate.
- Watch the video above to hear from survivors of Multiple Sclerosis, doctors, and what's next to find a cure.
BROADCAST TRANSCRIPT
"I was in graduate school, working and living a full life, and basically got the shock of my life," Caine said.
Yata Caine is one of our Tallahassee Neighbors…she tells me how she handled some news she didn't expect at such an early age.
"I can't say that I dealt with it initially the best way… I was in denial for a very long time…
Caine was diagnosed with Multiple Sclerosis… A disease in which the immune system eats away at the protective covering of nerves.
"Sometimes you have to just take a minute... adjust to the situation and figure out your next best steps," Caine said.
According to the National MS Society, the state of Florida is home to more than 20,000 MS patients.
Most of them are in the early stages of life like Caine.
“I have people that have multiple Sclerosis that are very young and in a wheelchair. It’s a very wide spectrum of the disease.”
MS diagnoses are becoming more frequent — the National MS Society confirming nearly one million people are living with MS in the United States, more than twice the original estimate.
Reasons like these are why neighbors are trying to take control of the disease. ABC27 talked with Dr. Mayra Montalvo Perero, a board-certified neurologist, neurophysiologist and neuroimmunologist at the Norman Fixel Institute for Neurological Diseases at UF Health.
We asked her if Multiple Sclerosis is well-funded in research and the challenges surrounding it.
"It is well-funded, 30 years ago we didn't have that many medications… now there's a lot of research… a lot of it is driven by Pharma… that causes a little bit of a problem because the medications for MS are very expensive," Dr. Montalvo Perero said.
Expensive is right… According to the National Multiple Sclerosis Society, as of February 2022, the median annual price of a brand-name disease-modifying therapy was close to $94,000.
Saturday, Walk MS Tallahassee took place at the North Florida Fairgrounds… using their steps… to help get access to better care for Multiple Sclerosis…
"One of the first things you have to do is find a doctor that's a good fit for you… you're dealing with something new… something that is challenging… it could be quite difficult to find a good fit at times, so you may have to go to more than one doctor," Caine said.
Access to care in our area can be difficult.
“Sometimes it’s hard to find an MS Specialist…Being far away from an academic center may impact the time between a diagnosis and the time between wanting to start a medication," Dr. Montalvo Perero said.
When our neighbors have better access to care they can be diagnosed faster and have better outcomes.
"It's a time for awareness… for people who do not know about MS… there are lots of different diseases that people can quickly catch onto and understand what they are… but a lot of people don't really understand what MS is," Caine said.
Caine tells me challenges like financial burdens, access to care, and a cure for MS are the reasons why they walk.
