Sept. 3 2014 12:00 AM

Life as a Zebra Foundation pushes invisible illnesses into the light

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“Want to do handstands?”

The answer was clear. One sister dashes into the house to change out of a sundress and the other gets a head start practicing.

“Come on, Katie!”

The brunette bounds out the door pulling her hair back.

“Stag?”

“OK. Go!”

The sisters effortlessly hold themselves upside down, legs and toes pointed like a prancing horse.

Or would that be a zebra? Things aren’t always as they appear.

That’s something Lansing natives, Allie Dama, 26 and Katie Dama Jaskolski, 32, know all too well: They live with rare diseases that have few visible symptoms and are hard to diagnose.

The spontaneous gymnastics in the front yard of Katie’s northside home last Thursday was a much-needed timeout play session. An ode to more youthful and promising days.

Last week brought tough conversations with family about Katie’s workload. The kindergarten teacher schedule was tightening as the school year gets ready to start. Stress was constant, and more was on the way.

An hour later she would be on the road to Indiana for her monthly prolotherapy — 100 injections in her spine. It’s a treatment that will bring agony before relief, but it’s one she says is keeping her able.

Both sisters live with chronic conditions with hidden and masked symptoms. Allie has PAN vasculitis, an often-fatal disease that causes inflammation of blood vessels and tissues. Katie has two rare conditions, Ehlers-Danlos Syndrome (for which she receives the spine shots) and postural orthostatic tachycardia syndrome. EDS creates overly loose joints due to faulty collagen. POTS causes irregularities in the autonomic nervous system.

Unlike cerebral palsy or even Down Syndrome which have outwardly recognizable effects, the conditions the Dama sisters suffer from are largely internal and invisible to naked eye.

But the sisters are on a mission to make the invisible visible with their nonprofit organization, the Life as a Zebra Foundation (zebranation.org). The organization aims to raise awareness and funding support for research and programs.

The girls with the POTS and PAN
The story of the Dama sisters cannot be told without gymnastics.

Both Sexton High School grads were talented gymnasts in the Twistars USA Gymnastics program, landing spots on their college gymnastics teams. They trained 25 to 30 hours a week. It was their identity.

They lived to move. Their bodies literally bent to their will.

Katie’s gymnastics career ended early even though she made it onto the Michigan State University gymnastics team. An injury she suffered in high school that was improperly repaired benched the athlete.

Allie carried the torch further with a gymnastics scholarship to the University of Maryland. She had won national championships. She was a rising star.

But her light dimmed in 2008 when she started experiencing pain that she at first attributed to her intense athletic training.

It became “excrutiating,” and she got to the point where she said she “couldn’t squeeze toothpaste.”

She suffered through six months of the pain and nighttime fevers that doctors dismissed as a cold or flu.

She recalls collapsing on the kitchen floor that Thanksgiving in Lansing. A few weeks after she returned to Maryland, her mother called the athletic coaches to insist she go to the hospital.

She spent 49 days in the hospital as doctors struggled to figure out what was wrong, she steadily lost weight — 40 pounds in total. Her parents moved in with Allie’s roommates in College Park, spending every day at the hospital living on bologna and cheese sandwiches from the 7-Eleven.

Allie started to have seizures. She was in the early stages of renal shutdown. She almost died.

But she believes an angel was sent to her on Christmas. A Jewish doctor who was working over the holiday demanded a kidney biopsy. That biopsy showed the inflammation of the tissues, which led to the diagnosis of PAN vasculitis.

She started a three-year therapy plan that included chemotherapy and steroid treatments.

She’s been in remission for the last two years from the physical disease, but in many ways she is just starting to heal emotionally.

“I’m still working through it,” Allie said, “Something that changed me, gymnastics, was taken away from me. I’d done it for 17 years. It had been my day-to-day routine. I had a full ride scholarship. I was practicing every day. I was on this awesome gymnastics team and I loved every minute of it. And then to get sick and go through all that I went through was very tough . … I kinda feel like I have some closure issues with that that I’m working out because it was taken away so suddenly.”

Allie was barely on the road to recovery when Katie began experiencing back and stomach problems. Still very athletic as a runner, she started to take it easy with less physical activity.

“My body was falling apart,” she said.

But little did she know, the stillness would make it worse.

She said she was diagnosed with irritable bowel syndrome and then started having joint problems. She had multiple MRIs and suffered three herniated discs, dizziness and lots of fatigue.

She eventually ended up in a back brace and neck brace to give her stability. She also had to use a wheelchair.

Katie would exhaust her way through 23 different doctors before getting a diagnosis of EDS and POTS.

EDS creates fragile skin and unstable joints as a result of faulty collagen.

POTS causes irregularities in the autonomic nervous system, which controls heart rate, blood pressure, temperature, respiration, digestion and other vital functions.

EDS is a genetic condition. Both are rare.

“I’m double zebra,” Katie said.

They don’t know how statistically rare they are to be in the same family with their unrelated conditions, having the symptoms manifest so close in time.

They do know it took a lot of strength for the family to endure. Their father was diagnosed with cancer during the time the sisters got sick also.

They say their mother was a huge source of strength through the stress – and even added a welcome dose of silliness.

One day their mother looked at them and rolled on the floor in hilarious laughter, “You two are pots and pan.”

Zebras are looking for hope

The Life As a Zebra website says, “In medical school, students are taught to diagnose patients based on the condition that’s most likely. This idea goes along with the saying: ‘When you hear hoofbeats, think horses, not zebras.’ The horses are the likely explanation, while the zebras are less likely. A medical zebra, then, is a person with a rare medical condition.”

The Dama sisters want the foundation to include all invisible conditions as zebras, not just the rare ones.

That would include multiple sclerosis, depression, chronic fatigue, lupus, fibromyalgia and others that bear no outward signs.

The foundation’s main goal is to raise awareness, and that includes empathy.

Katie tells the story of the skeptical looks she gets on her bad days when she uses her handicap parking permit.

“I cannot tell you the amount of confused, surprised or even angry looks I’ve received on the days I’ve been forced to use my handicap sticker or wheelchair,” she said. “I realize I cannot expect people to know if I don’t try to explain myself and what I go through. This is where awareness comes into play.”

The need for awareness includes the medical community.

Both sisters describe frustration at the diagnosis process, which can be lengthy and full of inaccuracies.

Katie’s been told she’s just depressed.

“I’m depressed because my body is losing function fast,” she would tell doctors.

And even after her diagnosis, when Allie has needed urgent treatment for pain, she’s been told she’s “drug-seeking.”

Often those with invisible illnesses can “feel like they’re at a dead-end,” Katie said. “It’s hope. People are looking for hope.”

Dr. Richard Neubig, a professor who heads the Pharmacology and Toxicology Department at Michigan State University, is researching scleroderma, a rare disease that causes hardening and tightening of the skin and connective tissues.

Neubig said medical schools could improve “educating physicians and putting them in a situation where they can better empathize with patients, where they can try to really understand what the patient is saying and not jump to conclusions.”

But many doctors don’t have a lot of time to spend with their patients. Neubig said it’s not unusual for doctors to see six to eight patients in an hour.

He said doctors are under pressure to spend time that results in reimbursements.

“Physicians are not reimbursed very well for spending time and talking to patients,” he said.

“As an example, I worked in the hypertension clinic at the University of Michigan and might spend a whole hour with a new patient just talking to them.”

But he said often physicians are only reimbursed for providing procedures, not consultation.

“So, I think changing the way we reward medical practitioners could help,” he said. “If you do have the time to listen to someone, you may have a better opportunity to understand what they are going through and respect that and take that in and treat it as seriously as it should be.”

Frustration is exacerbated with how long it can take to get a diagnosis.

Neubig said it can take five to 10 years to get a diagnosis for scleroderma. It’s easier for some diseases if there is a specific test that can be used. It’s still up to the physician to observe key symptoms to indicate the special test is warranted.

Still, some conditions have no test.

“Many are hard to have a definitive diagnosis,” he said. "A  good example is chronic fatigue syndrome, it’s still one where the symptoms are potentially somewhat vague and physicians put it off to something that may be quote – in your head – end quote.”

Racing hoofbeats
The Life as a Zebra Foundation skipped crawling and went straight to racing.

What started as a fundraiser for awareness grew into a nonprofit in 2012. It has raised more than $60,000 so far from annual benefit concerts, which have included Boston singer and songwriter Chris Trapper and Tony Lucca, second season runner-up on television’s “The Voice.”

This year they celebrated the first Invisible Illness Awareness Week in Michigan, May 25 to 31.

The resolution was introduced by Senate Majority Leader Randy Richardville, R-Monroe. They even went to Washington, D.C., in July to advocate for a national day of awareness, visiting Michigan representatives.

So far the nonprofit has given money it’s raised to other foundations.

But the sisters say they can see so much more they can be doing.

“We want to make it broader and more inclusive,” Allie said.

The mission is striking a chord, easily evidenced by looking on the Life as a Zebra Facebook page.

Heather Morgan Seibert wrote: “My middle son was diagnosed with EDS two years ago, he was 11 at the time. Hes now 13 and will be having a spinal fusion surgery in three weeks. Im scared to death and overwhelmed with anxiety after meeting with his surgeon last week.”

Barbara MacBriar: “It has bugged me for a long time that even though you explain what it is (especially depression) people go back to their beliefs that it is short term and you just get over it.”

The foundation is in the process of “rebranding” with a strategic plan to serve all invisible illnesses, not just the conditions the Dama sisters have, said Jan Pfeiffer, a Zebra foundation board member.

“Probably everybody knows someone with an invisible illness.”

Sharing their stories and themselves

The propulsion engine that pushes the foundation forward is the power of the sisters’ stories.

“It’s therapeutic most of the time,” Katie said. “This is therapeutic for me. Feeling like you are making a difference, or providing support for people who you know are so desperate and scared and help make a dent with that.”

Katie takes the time to answer most of the inquiries on website and social media. She gives speaking engagements. She answers the media inquiries.

Allie describes herself as more private and introverted than her older sister. She doesn’t like her medical condition to be the first thing someone knows about her. Sharing hasn’t always come easy, she said.

“I know that when I first was diagnosed and going through intensive treatment I wasn’t to the point where I could connect with other people or read their stories,” she said. “Vasculitis can be fatal, it’s often fatal. Honestly it freaked me out.”

“So for a few years I disconnected from it and focused on myself. And then as I got better and as I progressed toward remission is when I was able to start interacting more with people. I’ve had a good outcome given my disease. It’s kind of nice to be other people’s hope and show them things can get better, things do get better. It doesn’t have to always be bad.”

Allie, who lives in Maryland, is studying to be an occupational therapist. She said she has considered working with gymnasts, but she’s also interested in geriatrics.

The sisters coached a Twistars camp together last summer.

Katie’s story continues to unfold every day.

She has an intense physical therapy regimen, dietary restrictions and the monthly prolotherapy.

She teaches kindergarten in the morning and then goes home to rest and nap before waking up to tackle her other job, the foundation.

Learning the new rhythm of life that isn’t go, go, go has been tough.

Just last week her board of directors chastised Katie for overworking and not delegating enough.

Realizing her limitations has been humbling and empowering at the same time, she said.

“I can’t not work out or be active or I will be in a wheelchair,” she said. “I work out now to stand up. I can’t push myself to the point of sickness, but I do.

"I’m learning as I go.”

Going forward

The sisters lean back on the sofa hugging pillows.

The interview is winding down to more of a casual conversation. What do they like to do together?

Dessert. Slurpees. Music.

Music is a bond for the sisters. They love going to concerts and listening to music. They make it a big part of their fundraisers.

They are hoping Rob Thomas, lead singer of the band Matchbox Twenty will perform for their next benefit in April.

“We want to make a viral video and try to get him here,” Katie giggled along with Allie. “It’s like our dream.”

Thomas’ song “Her Diamonds" connected with Allie.

“It came out when I was in the hospital and his wife had an autoimmune disease and I have an autoimmune disease,” Allie said.

“Oh what the hell she said
I just cant win for losing
And she lays back down…
And she says oh
I cant take no more
Her tears like diamonds on the floor”

Neither sister knows what the future holds.

Allie said those with vasculitis usually are diagnosed later in life. She said the longer she stays in remission, the better.

Vasculitis shouldn’t prevent her from having children, but the chemotherapy might affect her ability to conceive.

She said normally they would have harvested some eggs before her treatment but because she needed treatment so quickly they couldn’t.

“I do have age on my side — hopefully everything will be OK in that department.”

Katie says she’s been given the green light to have children, even though those with EDS tend to have premature births and her ability to heal from tissue tears is compromised due to the elasticity of her collagen.

She said she’s on the fence and soulsearching.

“I struggle with what if I give my kids this?” But she said her doctor “just looked at me and said, ‘Do you wish you weren’t born?’ I said, no. And he said, ‘Well, there you go.’ ”


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