Exclusive: A Melbourne artist is facing the alarming prospect of losing the use of her arm unless she can secure funds for a rare and essential surgery.

Dayna Lynch, 26, is battling Ehlers-Danlos syndrome (EDS), a collection of often misunderstood connective tissue disorders that has significantly worsened for her in recent years.

“The severe pain began escalating around two months ago, forcing me to take frequent breaks,” Lynch explained.

“One day, I was in the middle of working and suddenly realized I couldn’t even operate my computer mouse with my hand,” she recounted.

“My arm is integral to my livelihood. It’s everything for my career—my hands are essential for the graphic design and website creation work I do.”

According to the National Library of Medicine, EDS is an umbrella term for a group of hereditary connective tissue disorders and it can result in sharp stabbing, tingling, burning, bone-crushing, shooting or aching pains.

Globally, EDS is thought to occur in around 120 per 100,000 people – meaning there may be around 31,000 people in Australia living with a type of EDS, the majority of which are female.

Lynch has now stepped back from her work at a construction firm and is slowly losing the ability to take care of herself.

She said it is getting to the point where she can’t brush her own teeth or get dressed.

“I just can’t keep living like this because it’s just… it’s too painful,” she said.

Lynch is no stranger to pain.

Since her diagnosis in 2023, regular nerve pain from EDS became her new normal.

It has now become “unbearable”.

However, finding a doctor who understood her symptoms or who could deliver any sort of treatment was difficult.

“I have seen everyone you can think of under the sun. I exhausted all avenues,” Lynch said.

“I was told it was all in my head, or that I needed to go see a different doctor.

“It’s just been a horrible mix of being told that it’s all in my head and it’s not real pain and that I’m basically hysterical.”

EDS is commonly misdiagnosed or underdiagnosed because of a lack of awareness and research.

The most common misdiagnosis involved patients being accused of fabricating symptoms and pain, the National Library of Medicine notes.

After meeting with neurologists and orthopedic surgeons, Lynch connected with a vascular surgeon who finally pinpointed the root cause of her pain.

He diagnosed her with something known as significant subclavian artery compression.

“The right subclavian artery, which is the highway where all the nerves and arteries that supplies, oxygen and blood into your hand is being basically crushed between my muscles and rib,” Lynch explained.

“It’s scary because I’ve been told that it has different stages of advancements, but it’s also a silent killer because it can lead to different complications like aneurysms and strokes and losing blood flow.

“In really extreme circumstances, you can lose a limb, but that’s really extreme.”

Lynch said she needs thoracic outlet decompression, a “highly specialised” surgery which involves removing a muscle and a part of the first rib to relieve compression.

The Mayo Clinic states this surgery is often only recommended if conservative treatments have not been effective.

Lynch’s health insurance won’t cover a “pre-existing” condition and requires a 12-month waiting period.

She now needs to pull together over $20,000 to fund the operation if she wants it soon.

“It would be my dream come true to draw, to paint without pain,” she said.

“This pain has taken away my art, so getting back my art would mean everything to me.”

Surgery won’t be a guaranteed cure, however Lynch said it would be a vital step in protecting her arm and mental health.

She has started fundraising for the cash, describing it as “last resort” after deciding she couldn’t pull from her or her partner’s superannuation.

“Taking $20,000 out of it now could mean $100,000, 50 years from now,” she added.

The medical confusion around EDS

There is not a lot of medical literature which links the role of orthopedic surgery and Ehlers-Danlos syndrome.

The American Journal of Medical Genetics notes that because EDS is often not diagnosed or misdiagnosed and is widely under-researched, surgeons can be reluctant to treat it.

“The situation can be extremely frustrating for the patient as well as the physician,” authors Roger Wolman and William B. Ericson wrote.

“Non-operative treatment is preferable, but for carefully selected patients, specific joint stabilisation and nerve decompression procedures can provide symptomatic relief when conservative measures fail.”