Kicking EDS with Pema

Pema has always had a very positive outlook on her condition and life, which is why you would not assume she had a serious medical condition if you bumped into her on the street. Pema has gotten worse and this positivity has faded. A normal day would see Pema wear her neck-brace to support her head, along with having multiple seizures, to regular dislocating of her joints to the point her jaw is permanently dislocated and the doctors can not do anything to help her. Her speech and thought process has slowed. Numerous emergency visits to hospital via ambulance and scarily on one occasion was rushed to the resuscitation room at Waterford University Hospital.

Pema's story starts at 16 when she was told there wasn't time to go through all her symptoms by a doctor. She fought and fought alone until she was 23 and we discovered her flexibility/hyper-mobility and chronic pain had a name. Ehlers Danlos Syndrome (EDS). Pema had to travel to London to get a clinical diagnosis and now 5 years later, no progress has been made on Pema's health and it has further deteriorated due to no medical care/support in Ireland.

For those that know Pema, know she is a very independent woman who has always been full of life and willing to help anyone in any way she can. Her love and passion of art is up there with the greats but sadly over the last number of years Pema's health has deteriorated leaving her needing 24/7 care that means she can no longer live alone. 




Due to the very rare nature of EDS, there is no one in Ireland to help Pema with her care and treatment. This leaves traveling to see specialists the last resort, which are based in London, Barcelona and the USA. 

We want Pema to lead a normal long life without pain and suffering and sadly the costs of travel and treatment abroad adds up very fast. 

Thank you all very much for your support for Pema and let's help her kick EDS to touch and keep the positive vibes flowing!!!!!!!!!!!! 

The beneficiary of all the proceeds from the campaign is Aisling Murphy Wall, Pema’s mother.