Discovering Ehlers-Danlos Syndromes
February 3 2020
Caroline Bailey talks about her journey to discovering she had Ehlers-Danlos Syndromes (EDS).
When I was a little girl I was a little quirky. I remember walking to school with my brother and my mum saying “if you stand on a crack you’ll marry a bat and a rat will come to your wedding” 😂😂. Well, I became so scared of standing on the cracks it was a nightmare walking to school some days! People thought I was playing hopscotch!
As a child I wondered why I didn’t fit in, why I found friendship groups hard. For example, I loved music but forgot the lyrics to songs that my friends would sing and bond over. I struggled to concentrate at school with brain fog and math was just impossible. When I got in from school I just slept due to fatigue. Who knew all the things I had been experiencing as a child could be related to a condition known as Ehlers-Danlos Syndromes?!!!
Ehlers-Danlos Syndromes (EDS) are a group of 13 genetic conditions that affect the body’s connective tissues. This includes skin, tendons, blood vessels, ligaments, internal organs and bones! People with EDS have a huge range of symptoms, which differ from person to person but there are some common traits. Typically, people with EDS have a greater than normal range of movement in their joints (joint hypermobility) as well as stretchy and fragile skin, that breaks or bruises easily. I didn’t know I had EDS until I was 43! Up until that point, I thought I was just accident prone and quirky!
I had a big wart on my finger and one day it bled and bled so much at school I thought I was going to bleed to death (very dramatic). My mum had told me this so I wouldn’t pick at it. I played netball for the B team but would always end up at the infirmary getting my sprained fingers bandaged together.
When I was 7, I crossed our very busy road to take my friend’s doll back to her house. On the way back, a car going 40mph hit me. My left leg took most of the impact and when paramedics arrived, I remember crying because they cut my favourite jeans off. I had x-rays and couldn’t walk for a day but apparently, I did more damage to the car’s headlights than the car did to me. I’d broken NO bones! My bruise was the biggest, most colourful you have ever seen – it even scared my classmates! When we undressed for PE, one girl cried!
High School was tough with Ehlers-Danlos Syndromes
Age 13 I started my periods and about a year later I had lots of pain and heavy bleeding each month. I also needed to take letters into PE to excuse me from showers. People were suspicious as to why I was avoiding the showers, as it’s not like you can show your mates or your teacher to prove why.
At 14, I took ‘the pill’ for heavy periods. After finishing school I completed a nursery nursing NNEB diploma in childcare. I nannied for 3 years and then became the supervisor of a day nursery. It was a very demanding job 8am-6pm and I had abdominal pain each month around the same time as my period. Later I received my diagnosis of irritable bowel syndrome (IBS).
Having kids was difficult with Ehlers-Danlos Syndromes
I got married aged 22 and had my first child age 23 but during my pregnancy I had a minor car accident and injured my back. The last 10 weeks of my pregnancy I slept in the bath to ease the pain! At 39 weeks pregnant I developed Bell’s Palsy and was admitted to hospital for 3 days prior to giving birth. My delivery was very painful as the epidural numbed my legs but not my injured back area.
Sam was born but I was upset as my face was still droopy and lop-sided. Nine months later I went to the Salford Royal Hospital for a steroid injection in my back and an MRI scan. Guess what the consultant said, “You have a genetic condition, go home, don’t work and raise a family”. I was devastated. He said I had also cracked my spine which would explain why the epidural hadn’t worked properly.
The second time I needed fertility treatment
I had trouble getting pregnant a second time and had fertility treatment.
Robyn was born in the Millennium and was beautiful, huge brown eyes and perfect. Shortly after she was born we noticed she had jaundice and ended up in hospital for 10 days. She also had a huge birthmark on her arm and a sacral dimple (an indentation in the skin on the lower back).
My 3rd child, Darcey, was born 5 years later. I was so delighted. She had huge green eyes, was blonde and looked like the petit filous child off the advert.
Diagnosing Ehlers-Danlos Syndromes – finally!
Robyn was diagnosed with Hypermobility age 14. As a result of her diagnosis I was sent for genetics testing where they confirmed I had Hypermobile Ehlers-Danlos Syndrome (hEDS), or EDS type III as it used to be known.
With my diagnosis came understanding – Ehlers-Danlos Syndromes sufferers can face a range of conditions that each have their own diagnosis. IBS (bowel and bladder issues), abnormally heavy periods, sleeping and fatigue issues, injuries and anxiety, fainting and dizziness on standing are all symptoms of EDS.
I don’t know if I have autism or a form or obsessive-compulsive disorder (OCD) but I do like things tidy, tins in the correct order and labels facing forward. My children also show some Autism Spectrum Disorder (ASD) tendencies but not enough to seek a diagnosis. We now know ASD can also be part of EDS.
More recently it’s suggested that having an underactive thyroid is a yet another condition of EDS. Malfunctions of the immune system (MCAS) and nervous system affecting the heart, breathing, sweating, digestive system, etc. are also linked to EDS.
There is no cure but it can be managed
Ehlers-Danlos Syndromes have no cure but the effects can be treated. Knowing the underlying cause of the other conditions really helps with their management.
Read part two of my blog on diagnosing EDS here: https://wecanaccess.com/diagnosing-ehlers-danlos-syndrome/ .
Hi, my name is Caroline,
I am 48 years old, married for 25 years and have 3 children, Samuel age 24, Robyn age 20 and Darcey age 15. I also have a stepdaughter age 37 and 2 step granddaughter’s, 3 dogs, 1 cat, 2 robo hamsters and a fish. A busy, busy house!
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