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I have joined the May Awareness Month Challenge to spread awareness and raise funds to support The Ehlers-Danlos Society by participating in the Daily Challenges. Please support me by donating to my fundraising page. Together, even a small amount can make a huge difference!

I had a 15 year diagnostic journey.

I first began showing symptoms at the age of 6. I went to the doctor for "ankle pain." I now know that these was my first partial dislocations. The doctor told my mother that I had a weak Achilles heel, and that I couldn't be in that much pain as I was young. He said I was "looking for attention."

My shoulders went next. Keeping my arm raised to answer questions in class became a two arm job - one to raise and one to support. I just thought I was unfit; that I wasn't trying hard enough. My body was failing me and all I had was hate for myself.

In my head, I was normal. My mother and Nan had all the same symptoms as me - in most cases worse. But they just had "issues" and "got on with it." That's what I told myself too. Doctors continuously turned me away, told me it was growing pains or that it was my depression/anxiety that made me feel worse. Probably true, but not fully true. I had a lot of seemingly separate issues, but as they say, if you can't connect the issues - think connective tissues.

I gave up with doctors for my physical symptoms. I just accepted my normal. I was even a dancer for 10 years. But then things got worse. The day before I left for university, my knee collapsed. I couldn't bare weight at all and needed a cane to stand (that i found in my Nan's things). I still went to uni and saw a physiotherapist. This is the point where I was told I was hypermobile. They told me that I had probably torn something and that physio would help. I did get stronger yes, but a year on my knee collapsed again while I was on holiday and I knew something was wrong. After a month of pushing, I got an MRI. Not only had I completely severed my Anterior Cruciate Ligament, it was missing.

I had an operation to reconstruct the ligament - but it will never be the same. I did have some peace though; I believed that all of my pain (minus my skin issues and possible POTS among other things) was due to some hypermobility. I was wrong.

This past January, my pain became unbearable and my dislocations more frequent. I am a retail assistant and a 3rd year university student - it's hard. One Wednesday after my shift, my back hurt so bad. I sat down in my local Costa and googled "Hypermobility back pain," hoping the online community would have answers. They did. I discovered EDS. I thought to myself "I can't possibly have a rare, genetic, incurable, connective tissue disorder!" But as I continued reading, I started crying.

I was reading my life's story.

After over 3 months of pushing the doctors for referral, and doing enough research on EDS to rival my dissertation, I saw a rhumatologist.

They diagnosed me with Hypermobile Ehlers-Danlos Syndrome on the 8th of April 2019.

The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders that produce a spectrum of complex problems across multiple systems of the body. Symptoms that are often seen across all types are hypermobile joints, (that can move farther than normal), stretchy skin, & fragile tissues. Each case is unique and severity may range dramatically, even within families.

The Ehlers-Danlos Society is a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. Our goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

Please support me and others as we overcome our challenges with EDS and complete daily challenges, by donating. Thank you!