Ehlers Danlos Syndrome (EDS) is a congenital condition that affects connective tissues; blood vessels, skin and joints. This is Maddy’s story, in her own words, about living with EDS.

Rare doesn’t mean we don’t matter.

I always knew something was different about me. I saw so many doctors when I was little trying to find out what was wrong that I lost count. It took 6 years to get my diagnosis of Ehlers Danlos Syndrome and now, 5 years later I am still learning how to live with it and how to manage how hard my life is!

Thinking back, my earliest memories are seeing so many different doctors and having test after test done. There were needles, MRI’s, different sorts of scans and I can remember it hurt so much having to lie still for them all. My worst memory is when I saw a doctor and she told me the pain I said I felt was in my head. My whole body hurt, it couldn’t possibly be in my head. I was 5. She kept telling me the pain wasn’t real and that my joints weren’t dislocating. I never saw her again but since then I have found it really hard to tell people that I was hurting or even that one of my joints were dislocated. I remember feeling like no one believed me and like no one cared whether or not I was in pain. I remember feeling really, really, sad all the time.

A year later mum found a doctor that believed me. He was a geneticist at the children’s hospital who knew straight away I had Ehlers Danlos Syndrome. I couldn’t believe that we had finally found out why I was in so much pain and for that I am really grateful. I remember him telling mum there was no cure or treatment and wishing her luck! I guess I was too young then to know what it all really meant and was happy with just knowing people believed me.

Since then I have had to grow up very fast. I have had to learn how to manage pain and how to put my joints back! It’s hard to accept that I will never be able to do what my friends do. It’s hard to accept my life is always going to be full of pain and that everything I do will make me hurt.

I have lots of struggles that people can’t see. Having EDS means that I have faulty collagen. So the glue that holds the body together isn’t very strong. It makes my joints very loose and I dislocate easily. I get tired really quickly, my muscles aren’t very strong and can’t always do the work my ligaments should. School is difficult because writing is sometimes impossible and I hurt all the time. It has also meant that I suffer from Postural Orthostatic Tachycardia Syndrome. This means that the blood doesn’t always make it to my brain properly so my heart races, I get dizzy and I can’t speak properly. It effects my digestion so I get tummy pains, and I have Reynaud’s which makes my fingers and toes really cold and really sore.

Learning to live with EDS is a daily struggle. Every day is different. Some days I wake up with dislocations and high pain and other days I don’t. Some days I can walk and run and other days I have to use a wheelchair. I have to think about every little thing I do and I have to decide on what is most important. If I run around with my friends today it could mean I can’t get up tomorrow. If I choose to make toast for breakfast it could mean I can’t write at school that day. I can’t do things just because it sounds fun like my friends do, I have to always think of the consequences.

I am lucky though because I have met people along the way who’ve helped me realise that I don’t have to sit on the side lines and stop being me! When I was 7, I met a teacher named Miss Arceri and she changed my life. She told me that being different means I am unique and that unique is awesome. She showed me that being different is what makes me, me. She helped me through a really hard time and I began to believe I could tell people about my EDS and that they would believe me. The following year I met another teacher called Miss Tuccitto. She encouraged me to focus on my strengths, like academics which have helped me understand that my life is not just EDS. She taught me to write from the heart and follow my dreams. She told me anything was possible.

By Maddison Parker

May is Ehlers Danlos Awareness month. To raise awareness about EDS, Maddy, with sister Kayla, gave a presentation at the Royal Children’s Hospital to Melbourne University Medics Paediatric Society (MUMPS), a group of medical students who have an interest in paediatric care. This presentation provided an invaluable insight, from a patient’s perspective, about living with a chronic illness and what every day looks like, outside of appointment times with healthcare professionals.