Jasmine Raskas rises slowly and carefully out of bed one morning in June 2017. Her movement is limited by a brace that runs along her sternum, back over her shoulders, around her neck and up the back of her head. It comes to stop at a grip on both sides of her cranium.
After shuffling around her apartment as she gets ready, she hops on a scooter and rolls forward, closing the door to her home behind her. She heads to an elevator and navigates her way through the multi-level apartment complex on Brentwood Boulevard until meeting a friend in an SUV who drives Raskas to her destination: a St. Louis climbing gym.
She leaves the scooter in the car, gingerly walks in, puts on climbing shoes, powders her hands, straps into a harness and begins to climb, still wearing her head and neck brace. On the wall, she moves more adeptly than most people do on foot.
And that’s part of what confounds observers about people like Jasmine who have Ehlers-Danlos syndrome (EDS), a genetic condition that affects sufferers’ connective tissue, often causing significant pain and limiting their ability to move normally. It is a disease that is difficult for doctors — or people outside of the medical field — to comprehend.
“Since I was 10, I knew there was something horribly wrong with me or very different,” says Jasmine, 25. “People were always making fun of the way I picked up things. I think they thought I was trying to be silly, but I was always really embarrassed by that.”
‘Range of mysterious health issues’
Jasmine played virtually every sport she could at Epstein Hebrew Academy and then Clayton High School despite her “range of mysterious health issues,” she said. But she quit them all by age 15 because of various pains and injuries.
“I was always falling,” she says. “People thought I was clumsy, or falling on purpose. I didn’t really know I actually had a problem.”
Jasmine had trouble digesting food, so she went on different diets to see if they would help. “Being a teenage girl, people assumed I had an eating disorder,” she adds.
And although Jasmine loved school and got good grades, she had trouble staying awake during her high school classes. Sitting made her extremely uncomfortable. And when standing, she sometimes fainted.
Still, she not only graduated with honors, but also was accepted to the University of Missouri-Kansas City six- year, accelerated medical school program. So in the fall of 2012 she headed west to pursue her dream of becoming a medical doctor. Part of her interest in this field had to do with trying to figure out her own distress.
“Year by year, I was becoming better at ignoring the burden of the body,” she wrote in her blog at Jasmineraskas.com. “Unable to alleviate my own suffering, I found peace in the idea that I could at least help prevent others from feeling this way.”
Unfortunately, her body continued to unravel.
Baffled by symptoms
Jonathan Raskas remembers with great clarity the terrifying phone call he got from Jasmine, his eldest child, in the spring of 2014 when she was 19 and a sophomore at UMKC. Her message was simple: “You’d better come get me.”
“It took me 30 minutes to throw some things in the car and start driving,” says Raskas, a financial adviser at Merrill Lynch Wealth Management.
“When I walked into her apartment, she was curled up in a ball, literally. I said, ‘What do you need?’ She said, ‘Not much, it’s in that stack.’ I literally picked her up with a blanket, put her in the front seat of the car, buckled her in, loaded the stack of her belongings and drove her to St. Louis.
“And that was the beginning of life-challenging symptoms that began to emerge at a very quick pace.”
Jasmine says she hadn’t realized it at the time, but her shoulder had been dislocating from its socket while she was sleeping and damaging the nerves in her arms. In her hands, there was only tingling or numbness.
“Everything seemed to be affected — my joints, my digestion, even my vision,” she recalls. “I wasn’t able to write, type or paint.”
EDS is most commonly known for causing joint laxity. But not all cases of the syndrome are the same. Some people may simply be more flexible and only slightly prone to joint sprains while others, like Jasmine, partially or fully dislocate multiple joints every day. She also struggles with her digestive organs — in her case, food doesn’t move fast enough through the digestive tract, which causes nausea and vomiting on a regular basis.
“It’s kind of like having the stomach flu on and off all your life,” Jasmine says. Other common problems include dizziness and fainting, extreme allergies and immune deficiencies.
Medical professionals in St. Louis seemed baffled by her symptoms. EDS is a rare disease: the U.S. National Library of Medicine says it affects at least one in 5,000 people worldwide.
“She was going to doctors who kept saying she is a hysterical, high stress young lady. ‘It’s all in her head,’ ” remembers her mother, Dede Raskas. “Can you imagine if you were trapped in that situation? Your body is falling apart and there’s no professionals to help.”
This is a common experience for people with EDS, according to Lara Bloom, international director of the Ehlers-Danlos Society. She displayed symptoms of the disease for 12 years before finally receiving a diagnosis, she said.
“It’s harder to diagnose” than some other diseases “because there’s not a definitive black-and-white test. It’s based on family medical history and a clinical examination,” says Bloom.
Eventually, Jasmine returned to a dermatologist she had seen six years earlier because she developed a skin rash. When this dermatologist had first seen Jasmine, at age 13, he noticed a stretchiness to her skin. “He had said I had a connective tissue disorder but didn’t explain what that meant or what it was because he didn’t know at the time,” says Jasmine.
But this time, when 19-year-old Jasmine explained her symptoms, the doctor pulled the skin on her cheek, noticed how elastic it was and said, “You have Ehlers-Danlos syndrome.” He recommended she see a geneticist.
“Truly, by chance, he set us on the right track,” says Dede Raskas.
Fusion surgery could possibly correct this problem, the family learned. However, in Jasmine’s case, her entire cervical spine is unstable. So to have the surgery, she was told, she would need seven to 10 vertebrae fused at one time.
“This is why I wear a neck brace,” she explains. “It’s dangerous for me to rotate my neck. If I have a bad fall or get into a car accident without the brace, I have a high risk for paralysis.
“My doctors feel that a brace is just as safe, or possibly even safer in the long run, than the fusion.”
The brace allows her to perform tasks she otherwise wouldn’t be able to do. But people usually stare at her. A day rarely goes by without someone asking what kind of accident she has been in. None of that seems to bother her; in fact, she welcomes the curiosity.
“That is a common theme among people with EDS. We love our braces,” Jasmine says. “They take away our pain and allow us to do things we otherwise wouldn’t be able to do.”
As she puts it, “I have learned to embrace the brace.”
In spring 2015, Jasmine returned to UMKC, wearing a neck brace. She used a glue gun to cover it with an array of colorful sparkles.
“That’s what got me to start my website, Embrace the Brace (embracethebrace.com), because I noticed that after I stuck on the bedazzles, I had totally different interactions with people,” she says. “Whereas before everyone just kind of tried to look away, instead, I started getting compliments.”
But after that semester, she took a second medical leave. She had slowly lost the ability to walk and had been in and out of the hospital for bladder failure.
“The neck brace was straightening and supporting my spine by stretching it upwards, while sitting and studying was stretching my spine downwards,” Jasmine explains. “The combination of these two things caused a related spinal defect to go from a minor problem to a major emergency in just a few months.”
That fall she underwent spinal surgery for tethered cord syndrome. The spinal cord attaches to surrounding tissue in a way that creates elongation and tension of the nervous tissue, leading to lower back pain, loss of bladder control, lower body weakness, and loss of sensation.
“I didn’t know if I would be able to walk again,” says Jasmine. “No one knew what to do about it or why this was happening.
“But luckily, after the spinal surgery, my walking came back pretty fast.”
It was then, Jasmine says, that she realized she needed to change course. Going back to school would once again mean hours hunched over her laptop and major stress on her muscles and joints. So she returned home to St. Louis and turned to art, which had always interested her. For her bat mitzvah, she researched art and Judaism at Epstein Academy and chose an art theme for the party.
“I painted throughout high school, and in college I would stay home painting,” she says. “I always loved color and the way you can blend color in painting.”
Jasmine says she always thought she would turn to art more seriously later in life. “But something about what I was going through made me realize I shouldn’t wait until I retired,” she says.
Jonathan Raskas says his daughter “was born a creative artist.”
“But she was also born a scientist,” he adds. “She can paint with the same intensity that she can dissect a physics problem.”
Given her physical limitations, Jasmine’s style of painting encourages randomness and makes use of shaky lines and awkward curves. Her brush strokes are in constant motion. Her colors are vibrant and bold and her subject matter, abstract.
She sometimes paints wearing finger braces. She also added clay to thin paintbrushes to make them easier for her to hold. She has worked at Artists First, an inclusive studio in Maplewood for people of all abilities. Other artists have used brushes Jasmine modified for her own use, according to Sheila Suderwalla, executive director of the studio.
“Now she’s helped other folks in our studio who need some sort of adaptation,” says Suderwalla. “Jasmine loves to experiment and has a great deal of patience. She has learned amazing techniques in using acrylic paints and the movement of those paints…Her artwork is so multifaceted.”
Despite her resolve, Jasmine still has difficulty standing for long periods of time, even with her neck and back steadied in a brace. Sitting, which can put enormous strain on her body, is worse. Physical therapy and weight training help, but Jasmine looks skyward for additional relief.
Climbing into the future
Jasmine says she never intended to become a competitive climber. She initially got into adaptive, indoor rock climbing in early 2016, about six months after her first spinal surgery, because she heard it was a good way to build muscle and strength.
“Rock climbing is a full-body workout,” says Jasmine, who wears a neck and head brace to hold her joints when on the wall. “I found it to be much less tedious and a lot more fun than physical therapy. It also decreases pain and strengthens my muscles just enough to keep my joints in place.”
She discovered the Adaptive Climbing Group, a community for people with disabilities who want to participate in climbing. She placed third in her division at a competition in Georgia in summer 2016 and qualified for the group’s world paraclimbing championship in Paris in fall 2016.
“When she first came up with this concept of climbing I was apprehensive about it,” says Jonathan Raskas. “But when I sat and listened to her, it made sense. It truly helps her biologically. It’s also has given her a sense of spiritual peace and achievement.”
It hasn’t been easy, either. After the Paris championship, where she came in seventh in her division, her medical problems continued.
She had suffered from chronic headaches since she was 16, but now they were out of control.
In November 2017, Dr. Fraser Henderson Sr., a leading EDS specialist, performed cranial reduction and fusion surgery on Jasmine in Baltimore. She spent 10 weeks before the surgery lying on the floor, unable to move because the pain was so severe. The surgery repositioned her spine and fused her skull to her C2 vertebrae to help alleviate her neurological problems and pressure from the headaches.
“My doctor initially thought it would be impossible for me to have the surgery because the rest of my neck was too unstable,” says Jasmine, “but they were able to do it because I strengthened my back and spine with climbing.”
Recovering from the surgery took months; she was told a full recovery could take up to three years. “The recovery process is similar to recovering from a stroke,” she says. “Without getting too technical, my brain was having trouble integrating and processing the signals it was receiving, which is very normal after this surgery.”
In April 2018, she had another surgery at St. Louis Children’s Hospital to help with her digestive problems.
Somehow, through all of this, Jasmine managed to get her bachelor’s degree from UMKC.
Embracing a new normal
Strength, determination and resilience are qualities that Jasmine’s family and friends use to describe her. “Jasmine is fiercely independent and wants to do everything on her own,” says her father. “She doesn’t like to ask for help.”
Adds Jasmine: “Independence is my No. 1 goal. At this point, I need help with vacuuming and deep cleaning my apartment, but otherwise I can manage.”
Today, Jasmine continues to live on her own in a one-bedroom apartment in Brentwood; her father lives in the same complex. She is still unable to drive and uses public transportation, Uber or gets rides from friends and family. She also uses a motorized scooter to go grocery shopping at the Target behind her complex. About half of her day is spent managing her health, be it going to physical or occupational therapy, swimming or adaptive climbing, she says.
“I go to the Y(MCA) everyday,” she says. “I try to get to the climbing gym four times a week. It takes me a long time, and I have to take a lot of rests to keep my apartment clean, do my laundry and all those other boring things in life.”
Sitting for any period of time is still very difficult, which is why she relies on a wheelchair specially designed for her.
She credits adaptive climbing with keeping her sane and helping her to become stronger both physically and mentally. This year, she again qualified for the world paraclimbing championship in Innsbruck, Austria.
“Rock climbing is saving my quality of life and I consider it a true treatment option for the way I am personally affected by EDS,” says Jasmine, who has been sponsored by companies like Evolv Sports, maker of climbing shoes. “I’m finding more and more each day, that learning to climb is analogous to learning how to properly live. We have no control over the wall, our external environment.”
The surgeries were largely a success, she says.
She is still on a liquid or soft-food diet but says, “my digestive issues have been stable. I no longer have horrible stomach aches and pains.”
And since October, she has not been wearing her braces, including when she climbs.
“Overall, I can do everything, almost, but only for short periods of time,” Jasmine adds. On losing the brace, she says, “People expect me to be really excited about coming out of the brace — and it’s not that I’m not excited, it’s just when you have something that works and is helping you — I really kind of liked it.”
Like many 20-somethings, she is figuring out her future and whether she can, as she says, “make a living off my creations.”
“That might not be just painting because I do like to write and work on other creative endeavors,” she says. She displayed and sold her art in October at the first Sababa Jewish Arts & Cultural Festival.
“My hope is that she doesn’t have to focus on her health so much and that she evolves into the best Jasmine she can be,” says her father. “The truth is she can do so many things well.”
Despite no longer wearing the brace, Jasmine is continuing to produce content for Embrace the Brace, which she says is about embracing yourself, no matter what.
“If you are given a situation, you can always make it worse, or make it better, so maybe that’s what the embrace the brace represents,” she says. “It’s what you have to work with, so you might as well make it pretty.”