Ex-RGGS student has rare genetic Ehlers-Danlos Syndrome

Stacey Schmidt aims to raise awareness of the plight of her fellow Ehlers-Danlos sufferers during the month of May.

Stacey Schmidt is sharing her Ehlers-Danlos diagnosis to raise awareness of the rare genetic condition.

Stacey Schmidt, a former Rockhampton Girls Grammar School student, wears silver ring-like devices on her fingers which, at first glance, look like some form of punk jewellery.

They are, in fact, finger splints which reduce the hyperextension and pain associated with her rare, genetic and chronic condition.

Ahead of Hypermobile Ehlers-Danlos Awareness Month in May, Ms Schmidt told the story of her diagnosis to The Morning Bulletin.

She had “20-odd good years” before waking one morning with a sore, upper left arm.

What followed were three years of what she described as a “traumatic” journey.

The initial diagnosis of an iron deficiency did little to explain Ms Schmidt’s multitude of symptoms which impacted virtually every system and organ in her body.

She described the experience as “excruciating, bathroom-floor-crying, foetal-position-rocking, wanting-to-end-it-all” pain.

Somehow Ms Schmidt completed over six years of training to become a fully-registered psychologist, but she is now too debilitated to work.

She is speaking out about the emotional toll of an incurable connective tissue disorder which will inevitably cause her young body to deteriorate.

“I feel sad that I’ll never be normal and fully healthy again,” she said.

“There are many things I’ll never be able to do, like jogging and contact sports; I virtually have an 80-year-old’s body so certain things are risky.

“I really don’t want to be wheelchair-bound but, if that happens, it happens.

“There’s a 50 per cent chance any future children I have will have Ehlers-Danlos, which is difficult to think about.

“I know with certainty there will be arthritis and osteoporosis.”

Some of the 14 types of Ehler-Danlos Syndrome are also associated with digestive issues, spinal degeneration and an abnormal heart rate, the latter of which can lower sufferers’ life expectancy to their 40s.

Ms Schmidt is also understandably emotional about how long it took for her to receive a correct diagnosis.

“Most professionals thought I may not even be sick after all, just exaggerating,” she said.

“A hypochondriac, someone trying to fulfil their drug addiction.

“Even those who believed me had no idea what was wrong, (and) misdiagnosed me with several different conditions covering only some of my symptoms.”

Today, Ms Schmidt relies on her fiance Corey as well as her family and a medical team.

“If I’ve learnt anything, it is that life is unfair; you are not guaranteed anything,” she said.

“I try and take each day as it comes and be thankful for what that day grants me.”

She shared her story with The Morning Bulletin to help raise awareness about Hypermobile Ehlers-Danlos Syndrome which affects one in 5,000 to 20,000 individuals worldwide.

It takes an average of ten years for a sufferer to be accurately diagnosed, and the advent of Covid made it doubly difficult for patients to seek help last year.

For more information about Ehlers-Danlos and how you can help during its awareness month, visit https://www.ehlers-danlos.com/may-awareness/