A WOMAN who had to endure an “extremely traumatising” childhood because doctors were unaware of the rare condition that regularly causes her bone joints to dislocate has set out to help other sufferers get an earlier diagnosis.

Natasha Evans had to wait nearly two decades to be diagnosed with Elhers Danlos syndrome (EDS), an incurable group of rare diseases that weaken connective tissues and organs, until “the best day of my life” at the age of 19.

The 31-year-old, from St Asaph, suffered at a time when EDS was barely acknowledged by the NHS but she persevered and has gone on to support scores of children and adults.

Natasha attended secondary school in Denbigh when she would visit doctors because she “couldn’t control my body” amid a list of comorbidities, including chronic pain, frequent joint dislocations, skin problems, gastric dysfunction, unexpected allergic reactions and dizziness due to heart complications.

“But the health professionals were saying I was fine,” she said.

“My experience before diagnosis was a real struggle and many of my symptoms weren’t managed at all.”

She blamed herself for “not being able to do simple things like self-care”, which led to an eating disorder because “food was the only thing I could control”.

Friendships were also made difficult and while she had support from her family “it was very difficult for them to see me so unwell and have no answers”.

Her diagnosis gave her “huge relief” and, while EDS is currently incurable, Natasha was able to better manage her conditions. She now takes more than 40 tablets, three injections and additional liquid medications daily.

“Things like getting out of bed and brushing your teeth can be like climbing a mountain due to severe fatigue and pain,” she said.

Despite these significant challenges, amazingly Natasha graduated with a master’s degree in psychology from the University of Bangor. She now works for Elhers Danlos Support UK where she has advised and supported 30 people aged three to 65 to get an earlier diagnosis, and lectured at Glan Clwyd Hospital’s rheumatology department.

Now living in Henllan, Natasha said she has an “amazing assistance dog and a really supportive partner and family” who accompanied her recent visits to a trampoline park and the zoo. She has even received an apology from several doctors for being unable to diagnose her earlier, which “gave me closure”.

“My work with EDSUK is to now make sure the same doesn’t happen to any other child,” she said.