31-year old Keisha Greaves of Cambridge, Mass., lives her life with flair.
With a degree in fashion design and merchandising, this fashionista lives and breathes style. Keisha, who has a subtype-unknown form of limb-girdle muscular dystrophy (LGMD), uses her fashion background to bring together two of her favorite passions: clothing design and advocacy.
When she is not working as a merchandise coordinator for apparel company Tommy John, Keisha spends her time developing inspiring clothing designs for her t-shirt line, Chronically Girls Rock. She also travels her home state educating people about neuromuscular diseases as MDA’s Massachusetts State Ambassador.
Unknown, but not alone
Fashion has always been a major part of Keisha’s life; LGMD on the other hand, has not. It wasn’t until Keisha was 24, while she was getting a graduate degree in business management, that she started experiencing muscle weakness for the first time.
“I was walking and my leg randomly gave out,” Keisha says. “At the time, I was heavier, so I thought perhaps I needed to lose a few pounds, no big deal. Then I began to have trouble raising my right arm, so I saw an orthopedist [in Boston]. He was amazed I couldn’t lift my arm, so he sent me to a neurologist.”
After visiting another Boston-area hospital, Keisha was diagnosed with a form of LGMD, although a specific subtype for her disease could not be determined, even after genetic testing. To this day, Keisha does not know her subtype; however, she knows that even without a more specific diagnosis, she is still part of a community of similar patients.
“I would like to eventually get the right type, but there are others out there [without a specific LGMD subtype], and we are part of a Facebook support group.”
Over the next few years, the progression of her condition became more pronounced, especially considering what she was formerly able to do.
“I could walk up 5-6 flights of stairs okay,” recalls Keisha. “I played in a softball league in middle school. I wasn’t a professional softball player or anything, but I was able to run.”
Today, Keisha uses a cane to get around, but she is determined to maintain her current level of strength.
“I do physical therapy at Spaulding Hospital [in Boston] and stay active, with exercises, swimming and walking. I try to keep my legs active and do as much as I can, while being careful that I don’t overwork myself. I take it day-by -day.”
And, in true fashionista form, her cane is not just a mobility aid; it is also a fashion statement.
“I have a different cane for different outfits,” she says with a laugh. “I go with the flow.”
Today, as a merchandise coordinator for Tommy John, Keisha travels to department stores all over the Boston area, checking in on the how the product line is selling. Although it is tiring to be on her feet most of the day, the work is very rewarding.
“The sales staff [at each store] is very generous and helpful doing things like bringing out back stock,” she says.
Outside of work, in addition to launching her t-shirt line, which features edgy slogans and designs meant to inspire anyone living with a chronic disease, Keisha has taken an active role in connecting with other people living with muscular dystrophy in the Boston area through social media, helping to plan trips such as a night out at Dave and Buster’s.
“It helps bring the young adults in the area together. We all support each other, even if some may not want to talk about [their situation].”
She has also blogged about living with LGMD for The Mighty.
This year, Keisha is sharing her experience with an even wider audience, as MDA State Ambassador for Massachusetts. She is the first young adult to hold the role. So far, she has had the opportunity to attend the MDA Muscle Team event in Boston and speak at the New England Fill the Boot Camp for fire fighters.
Keisha is excited about the opportunity to spread her message of perseverance at events and businesses throughout Massachusetts. Reflecting on her journey, she offers a closing piece of advice for anyone newly diagnosed with an adult-onset muscle disease:
“You have to stay strong and know that you may not be the only one dealing with this, that you are not the only one out there. We are all out here and support each other, we are all one, and will get through this together.”