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Mya's Story

My name is Mya and I’m a 15 year old girl, living with Ehlers-Danlos Syndrome type 3. The easiest way to explain my condition is that my body has faulty collagen. Collagen is best described as the glue that keeps your body together. Without it, my joints dislocate and fracture endlessly, and the pain is debilitating. 

 

My diagnosis journey has been a long, hard and painful process. I have been tested for multiple illnesses such as Osteogenesis Imperfecta (Brittle bone disease). It felt like no-one could help me.  One specialist even said to my mum “Do you think she may be making this up, is there something at school that she’s trying to avoid?” Needless to say that was the last time we ever visited that doctor again. 

 

Finally in April 2014 after years of riding the medical roller coaster, we believed we knew what we were facing. After an hour’s appointment with a Paediatric Rheumatologist I was diagnosed with EDS 3.

 

The spectrum of Ehlers-Danlos varies in degrees. Unfortunately mine is classed as an extremely complex and severe case, and I now have developed chronic regional pain syndrome in the majority of my joints. Most sufferers can take pain relief to assist in managing their pain; sadly I have severe reactions to pain relief, leaving me to face a life of chronic pain.  There is no cure for Ehlers-Danlos Syndrome.

 

These days I can’t even brush my teeth without my wrists dislocating.  It is in the aftermath of ligament and soft tissue damage that each dislocation causes that leaves me in so much pain. To date I’ve suffered 10 broken bones, and hundreds of dislocations and subluxations;  even laughing can leave me with a dislocated rib. 

 

Currently I am living in hospital under the care of a multidisciplinary team of specialists, undertaking long-term rehabilitation. I look forward to weekends when I get to go home and visit my dad and two younger sisters. 

 

I would really love to spread awareness on this rare condition. I plan on taking a role as an ambassador for EDS in the future.