From: Mayo Clinic News Network
Need Caregiver Certification? Get that through the American Caregiver Association right here
Lori Earley feared that worsening symptoms of Ehlers-Danlos syndrome would put an end to the successful art career she’d worked so hard to build. After she sought help at Mayo Clinic, however, a dedicated care team helped Lori arrive at a different outcome.
graduating at the top of her class at the School of Visual Arts in New York
City, Lori Earley was well on her way to fulfilling her childhood dream of
becoming a working professional artist. Praised for her “rare signature
authentic portraiture,” critics said her “stylized, elongated
subjects echoed Mannerist elements and the dramatic lighting of the Baroque
daughter of a police lieutenant and administrative assistant from the small
Westchester County, New York, hamlet of Rye, Lori was in demand. Her art
quickly drew the attention of galleries and collectors nationally and internationally.
Lori had solo art exhibits and shows in New York, Los Angeles, Seattle and
an artist, Lori had made it. From the outside looking in, it appeared she had
everything she could ask for in life. Yet on the inside, Lori felt like she was
slowly dying. “I’ve been in pain my entire life, ever since I was a
kid,” she says. “People always said, ‘You’re too young and healthy to
be sick.’ But I was always in pain, and nobody ever took me seriously.”
That changed in 2010 when, at the height of her success as an artist, a geneticist in New York City diagnosed Lori with Ehlers-Danlos syndrome (EDS), a group of inherited disorders that causes progressive and chronic pain due to hypermobility of the joints and hyperelasticity of the skin.
had a lot of shows, and I just couldn’t keep up,” Lori says. “I was
getting sicker and sicker, and still nobody was taking me seriously because people
with EDS look really healthy on the outside. We actually tend to look younger
than most people our age because our skin looks more elastic.”
Unable to find a local specialist familiar with treating her disease, Lori was forced to make one of the hardest decisions of her life. “I knew I had to immediately shut down my art career,” she says. “I’d been told I needed immediate, ongoing medical help. So I decided to move to Florida to be closer to my parents and to be closer to Mayo Clinic in Florida because I’d read Mayo Clinic is one of the few medical facilities in the country that has care providers who are familiar with treating patients with EDS.”
Getting her body moving the right way
One of the first care providers Lori met at Mayo Clinic was Thomas Rizzo, M.D., a physician in Physical Medicine and Rehabilitation. After examining Lori, Dr. Rizzo determined she needed a personalized strength training and physical therapy program to combat the effects that hypermobility and hyperelasticity were having on her body.
“I decided to move to Florida to be closer to my parents and to be closer to Mayo Clinic in Florida because I’d read Mayo Clinic is one of the few medical facilities in the country that has care providers who are familiar with treating patients with EDS.”
coming to Mayo, Lori had been managing her EDS pain with back supports and braces.
She also tried standard physical therapy and neck exercises, but that seemed to
increase her pain. “That’s not surprising because when healthy people
exercise, they assume that everything’s going to stay in the right place,”
Dr. Rizzo says. “But for someone with EDS who’s hypermobile, the way their
muscles and joints move isn’t always consistent, so strength training exercises
for them need to be a little different.”
assessing Lori’s individual needs, Dr. Rizzo had the ideal duo in mind to guide
her through her strength-training journey: Mayo Clinic physical therapists Sunni
Alessandria, D.P.T., and Edsel Bittencourt.
initially did some manual therapy with her to work on soft tissue and get her
muscles relaxed because a lot of patients with EDS have pain due to their
hypermobility,” Alessandria says. “Their joints are stressing. Everything’s
painful, and they tense up. Edsel did a lot of work at the start of Lori’s
physical therapy program to help relax her, and then he sent her to me to start
Alessandria introduced Lori to a form of exercise she frequently uses with her EDS patients: Pilates. “The Pilates reformer (exercise machine) is a great tool to work with EDS patients because it’s an overall body workout,” Alessandria says. “Patients with EDS are already hypermobile, so they don’t need a lot of stretching. What they need is strengthening. Pilates is a safe way for them to strengthen their entire body without stressing their joints.”
Building muscle, slowly but surely
Lori could begin to experience the strength-building benefits of Pilates,
however, she had to be convinced it was safe. “Initially, we had to work
to get her over her fear of exercising and moving, just because it had caused
her so much pain in the past,” Alessandria says.
helped Lori overcome that fear slowly and methodically. “We started very easy
by just having her lay down,” Alessandria says. “We then moved into
some light leg resistance that was really no different than standing up and
sitting down. It was basically just doing a leg press in a different position. We
then moved into working on strengthening her core.”
also focused on strengthening Lori’s abdominal and arm muscles. “We did
some breathing principles and relaxation techniques, and she liked that because
it was a very smooth and calming routine,” Alessandria says. “Pilates
is all about centering and controlling the body. It’s about smooth movements,
flow and precision. It’s not about how much weight you can lift or how fast you
can go. It’s a series of very methodical, slow and controlled movements while
you’re engaging and strengthening your core.”
the end of her physical therapy treatment plan two months later, the strength-training
movements Alessandria had shown her had begun to make a big difference for
Lori. “It’s helped me so much,” she says. “I used to
occasionally need a wheelchair, walker or cane to get around — depending on
what was wrong with me at the time and how much pain I was in. But since I
started my physical therapy program at Mayo Clinic, I haven’t even had to use a
Back at the easel
that continues to be the case as long as Lori adheres to the physical therapy
program Alessandria designed for her. “Managing EDS is a lifetime thing. It’s
not something you treat once, and you’re done,” Alessandria says. “Me
seeing Lori for two months isn’t going to do it. From here on out, it’s going
to be her continuing to do these exercises for the rest of her life. That’s
going to continue to make all the difference in how she feels.”
“Being able to paint again means everything to me because I’ve worked so hard my entire life to get to where I am as an artist. I did not want all of that to be taken away because of EDS.”
buying her own Pilates reformer, Lori says keeping up with her weekly exercise
program has been easy. “I’ve been doing the program at home for two years
now, and I continue to feel really good,” she says. “In fact, if I
don’t do it, I notice a huge difference in the way I feel. I just feel so much
better when I’m actually doing my physical therapy regularly.”
more, Lori’s in-home physical therapy program also has given her the strength
to pick up a paint brush again. “Being able to paint again means
everything to me because I’ve worked so hard my entire life to get to where I
am as an artist. I did not want all of that to be taken away because of EDS,”
Lori says. “Thanks to Edsel, Sunni and my team of doctors at Mayo Clinic, I’ve
got my life back again. I’m so grateful to all of them.”
- Learn more about Ehlers-Danlos syndrome.
- Check out the Department of Physical Medicine and Rehabilitation.
- Explore Mayo Clinic.
- Request an appointment.