T-R PHOTO BY SARA-JORDAN-HEINTZ - Despite a busy and active lifestyle, Aimee Deimerly-Snyder lives with chronic pain in the form of Ehlers-Danlos syndromes, a rare, connective tissue disorder. But she doesn’t let it define her.

If you know Aimee Deimerly-Snyder from her role as volunteer coordinator at the Iowa Veterans Home, owner of Lillie Mae Chocolates and consultant with Lularoe, you might not know she has a rare, degenerative disease. That’s because it’s invisible.

She lives with a connective tissue disorder called Ehlers-Danlos syndromes.

“The hardest part is you experience a lot of pain. I’m a very active and busy person, so I don’t want to have a day where I’m not able to work. So you just push through and put a smile on your face and move forward,” she said. “I was diagnosed with it six years ago when I was 39 — but I’ve had it all my life. The diagnosis explained so much.”

A native of Missouri, Deimerly-Snyder has lived in Marshalltown most of her life.

“I held the record as a kid for the sit-and-reach in school which was kind of funny because I thought I was really talented (to be so flexible),” she said with a laugh. “I didn’t know I had a disorder.”

EDS are a group of related disorders caused by different genetic defects in collagen. Mutations in at least 19 genes have been found to cause EDS. Symptoms include joint hyper-mobility, lax skin, tissue fragility that leads to bruising and abnormal scarring, blurred vision and trouble with balance and coordination.

Pain becomes a way of life.

The combined prevalence of all types of EDS is at least 1 in 5,000 people worldwide. The hypermobile kind, which she has, and classical forms are most common, according to the U.S. Library of Medicine. The vascular type is regarded as the most life-threatening.

“If you think of ligaments like rubber bands, mine have all been stretched out,” she said. “Your joints are constantly moving and muscles are tight trying to keep those joints from slipping. My joints easily dislocate or partially dislocate, which is called subluxation.”

When she slips off her shoes and then sits or lays down — with her feet no longer supported by body weight or the form of the shoes — her toes often dislocate. Fingers, too are easily susceptible to popping out of their joints.

Deimerly-Snyder said her day-to-day symptoms range from mild to severe.

“I belong to some support groups, and people with this say major life changes like puberty, pregnancy and menopause can cause a swing in symptoms,” she said. “I definitely noticed it with my three pregnancies. When I went through puberty, my hips would pop out of their joints, but I thought it happened to everyone.”

A doctor in her childhood said her joint discomfort was caused by “growing pains.” In her 20’s, she was diagnosed with early-onset arthritis and also suffered from unexplained muscle spams. It took a chance encounter at one of her son’s soccer games for Deimerly-Snyder to gain insight into EDS.

“The only reason I knew I had it was another girl that has it, but a different type, happened to see me at a soccer game and she saw that I was sitting with my elbows turned the wrong direction,” she said. “I also have a very large keloid scar on my back. She asked if I had EDS and I thought she was nuts, but then I Googled it and realized I had the symptoms.”

Deimerly-Snyder got referred to a rheumatologist who confirmed the diagnosis.

“I’m in daily pain but I’m lucky to be as mobile as I am,” she said. “You don’t want to be a complainer all the time. When people notice when I’m having a bad day and ask what’s wrong, how do you even start to tell them what’s going on? So I usually say ‘oh, I have a bad knee.'”

Deimerly-Snyder said a recent knee replacement has been a game changer for her.

“It took my pain in that leg from a 9 to a 3. I’m having the other knee done too,” she said.

She said if she had gotten diagnosed earlier in her life she would have made some different choices.

“I loved running, aerobics and aggressive yoga but it’s hard on the joints,” she said. “If you think you have EDS you need to care for your joints.”

Because the disease is progressive, she knows her health status is ever-evolving. She has a strong support system in the form of husband Tom, their three sons and her mother Becky. Keeping regular appointments with her physical therapist helps her manage her symptoms.

“When your inflammation is really high, it just affects everything, and connective tissue is everywhere in your body — skin, eyes, internal organs and joints — and my biggest problem just happens to be joints,” she said.

Deimerly-Snyder has kept her condition a relatively private matter, but she hopes by sharing her story those who may be suffering in silence will know they aren’t alone.

“I’m not going to let this define me. I want to live my life the way I want to. It’s made me a much more understanding person for other people’s pain. So many people have things you have no clue about. Invisible illnesses are hard. I never judge people if I see them parked in a handicapped spot but they look healthy,” she said. “Kindness goes a long way.”