Hello and welcome to Part 2 of my Ehlers-Danlos Syndrome Series! Make sure you read Part One and maybe grab a cuppa. Some of you might be wondering what the hell is Ehlers-Danlos Syndrome (or EDS for short) so here is a link that explains it a lot better than I could.
I’m sort of really lucky that I was diagnosed quite early in my life so I have had to draft in my mum to help me fill in most of what I had forgotten.
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To start I was born very floppy, I would literally flop all over the place but in a cute baby way. On a health checkup the nurses noticed I had mild positional talipes (also known as clubfoot). I had to get physio to try and manipulate my ankles back to ‘normal’. My ankles were easily manipulated so the physio worked really well and after around 3 months, they were happy with my progress so discharged me, I guess EDS helped me here.
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Back to 18 months old + I constantly dislocated joints especially my elbows, after a few A&E visits they decided to show my mum how to do it herself and getting it back in joint, she’s been able to get all my other joints back in too bonus of having a nurse as a mum!
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Moving on to when it was time to try find me walking shoes, nothing would fit as when I stood, my feet would contort and go completely flat. Drs weren’t happy so I was sent to the children development centre to be assessed by a team of physios. They came to the conclusion that I was just hypermobile and sent me to have orthotics made to keep my ankles/feet in place, I was meant to see them every few months to get new ones for my growing feet but I broke them all the bloody time because my feet would bend them in all the wrong places and snap them. They tried every last splint style but I thought it was so cool that I got to have plaster cast every time. I saw the same two guys my whole time growing up and they were such amazing people who always made me laugh.
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In 1999 my adorable little brother was born, he was the exactly the same, super floppy, his major issue as a child was his knees. Everyone was more careful with him so suffered less dislocations as a baby and toddler. Growing up I was sort of the experimenter, I tried all the splints, I went through all the appointments, the physios and operations. Everyone was more careful with him and I’m so grateful for this.
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Age seven, I was playing with a friend making dens, my absolutely favorite thing to do, and I must have hurt my hand while playing and ran to my mum saying my hand was really really hurting. My mum said my knuckle was so red and inflamed so we went to A&E. They set me to a orthopedic hand team, they concluded it was a tendon injury and it had been teared off the bone usually done by a high impact injury. The staff in both A&E and the orthopedic team were adamant that I must have done a high impact activity to cause the damage I did but I didnt, I was just playing dens. The orthopaedic hand team sent me to a to have hand splints made and had me to rest it for 7 months to try and help it heal.
I actually met the women who made my splints again last year for a thumb splint I needed and she remembered me, benefit of having a unusual name or was I just to cute to forget. ?
I went back to the orthopedic hand surgeon a few times, so they could check on its progress but after 7 months it still hadn’t healed and they really wasn’t happy so decided to schedule an operation to fix it..
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My mum was starting to get more suspicious of all of my injuries and it was getting obvious that something was wrong. Fortunately my mum is a nurse and looked after this women with Ehlers-Danlos Syndrome, my mum began talking to her about this syndrome and found out that things started to sound very familiar. It was quite obvious that whatever my brother and I had was passed on from my father, he had an ongoing battle with his joints all of his life and at the time his shoulders were most problematic and he was always in chronic pain.
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The internet wasn’t a common thing in 1998, not for us anyway and if it was available there wasn’t many resources (or any at all!) so my mum and her friends troweled through medical journals and papers to try find something more on Ehlers-Danlos Syndrome.
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The night before the surgery for my tendon repair I (luckily) got really poorly with a stomach bug so the operation was cancelled and rescheduled. Literally a few days after another tendon went and then again a few days later until all of my fingers had ruptured. We had an appointment with the hand surgeon were my mum raised concerns she thinks I may have Ehlers-Danlos Syndrome. The surgeon thankfully said he wouldn’t touch my hands until I had a diagnosis (or not) and told my mum to go to the GP. My mum had already been to the GP’s a few times but went again and again. She was continually told she was just being an overanxious mother but after insisting we were transferred to see a pediatrician.
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At the pediatrician’s appointment my mum raised concerns about the possibility I had EDS, after some research they agreed and started looking into how to get us diagnosed and who could do so. They decided to send us to a geneticist. At the geneticist’s appointment they did examinations, looked into our family history and swiftly diagnosed us with Ehlers-Danlos Syndrome type 2/3 which is now classified as Classical/Hypermobile. I remember being in the room when she told my mum and dad, I remember her talking through what this meant but I was 7 all I wanted to do was colour. One thing stuck in my mind though, she mentioned about the difficulty and complications of pregnancy with EDS and that she’d have to see me when I came of age, I have know idea why I remembered this at aged 7 but whatever 7 year old me, you do you.
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I think I was extremely lucky that I got diagnosed so early. I did have problems from birth (and being birthed) so it did take us 6 years but to think that certain unrelated events pointed the finger to what was wrong and give us answers. I wasn’t just a fidgety kid that got told off constantly for fidgeting, the kid who always hurt themself while playing, the kid who was always ‘complaining’ that this and that hurt, the kid that was always the last kid to finish on sports day, I could go on but I’ve got to thank my mum so much for pushing to find out what was wrong.
The the only advice my mum and I have to anyone trying to get a diagnosis with whatever it is just keep pushing! If you believe you have EDS then print information from reliable sources such as EDS UK, write down all of your symptoms and tell your doctor that you believe you have EDS and wish to be referred to someone who could look into it further and don’t back down. If this doesn’t work go to a different doctor and so on. You deserve a diagnosis if you truly have it.
Every person experience with EDS is going to be completely different, you’ve got to think of us as snowflakes or to be more adapt a zebra…
“When you hear the sound of hooves, think horses, not zebras.”
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I think I was extremely lucky that I got diagnosed so early. I did have problems from birth (and being birthed) so it did take us 6 years but to think that certain unrelated events pointed the finger to what was wrong and give us answers. I wasn’t just a fidgety kid that got told off constantly for fidgeting, the kid who always hurt themself while playing, the kid who was always ‘complaining’ that this and that hurt, the kid that was always the last kid to finish on sports day, I could go on but I’ve got to thank my mum so much for pushing to find out what was wrong.
The the only advice my mum and I have to anyone trying to get a diagnosis with whatever it is just keep pushing! If you believe you have EDS then print information from reliable sources such as EDS UK, write down all of your symptoms and tell your doctor that you believe you have EDS and wish to be referred to someone who could look into it further and don’t back down. If this doesn’t work go to a different doctor and so on. You deserve a diagnosis if you truly have it.
Every person experience with EDS is going to be completely different, you’ve got to think of us as snowflakes or to be more adapt a zebra…
“When you hear the sound of hooves, think horses, not zebras.”
Devon x
What is EDS?
My Chronic Illnesses
[Why The Zebra?]
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