Thursday, April 25, 2024

I was diagnosed with limb-girdle muscular dystrophy at age 24, after years of questions surrounding my condition. There are multiple subtypes of this disease, and doctors to this day have yet to identify mine. I’ve been rejected from multiple clinical trials, as the question marks surrounding my condition don’t “qualify me.” That’s why continued research and innovation is so important – it stands between me and new treatments, and possibly even a cure for many types of MD.

Despite my diagnosis, I’ve remained optimistic. I’ve even created a brand, Girls Chronically Rock, for women and girls facing similar circumstances, born of my background in fashion design and my desire to empower women with chronic illnesses to own their diagnoses and live life loud.

It is easy to have a hampered outlook because of the state of things; for a heaping dose of optimism, I want to remind everyone that we can count on our nation’s researchers and innovators who are working to cure both MD and coronavirus.

It is so important that our legislators do what they can to help our nation’s innovators. I know the cost of medicine is high – I’ve paid one too many medical bills myself. But if our government places price controls on medicine, this progress will be hindered and research into groundbreaking cures will be stifled. We must institute policies that ensure we can lower costs for patients while still protecting the future of medicine.

My friends and family often look to me when they’re feeling down, and my message to them is this: I know there is another side to the coronavirus. I want all of America to know that as well. But we need our lawmakers to pass policies that empower our innovators in the meantime, and that means finding ways to tackle the high cost of health care that still protects innovation.

Keisha Greaves, Essex Street