Discovering Ehlers-Danlos Syndromes

calendarFebruary 3 2020

An image of a smiling Caroline Bailey. Caroline has long brown hair and is wearing a zebra stripe top and red trousers.

by Caroline Bailey

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” 😂😂 I became so scared of standing on the cracks it was a nightmare walking to school some days, it was like I playing hopscotch. I would struggle to concentrate at school with brain fog and math was just impossible. I wondered why as I child I didn’t fit in? Why I found friendship groups hard? Things like I couldn’t remember lyrics to songs but loved music and my friends would bond over knowing all the words. I had to sleep when I came in from school due to fatigue. Who knew all the things I had been experiencing as a child could be related to a ‘syndrome’ known as EHLERS DANLOS SYNDROME?!!!

Ehlers-Danlos Syndrome (EDS) refers a group of 13 genetic conditions that affect the body’s connective tissues, including 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 typically people have a greater than normal range of movement in their joints (joint hypermobility), stretchy skin and fragile skin, that breaks or bruises easily.  I didn’t know that I had EDS until I was XXX up until that point, I just thought I was accident prone and quirky!

I remember having 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) but my mum had told me this so I wouldn’t pick at it. I played netball for the B team and would always be 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 I was hit by a car going 40mph. My left leg took most of the impact and when paramedics arrived, I remember crying because they cut my favourite jeans off my legs. I had x-rays and couldn’t walk for a day. Apparently, I had done more damage to the car’s headlights than the car did to me. I had the biggest, most colourful bruise in my leg which scared my classmates. When we undressed for PE, one girl cried she was so scared of my leg but I’d broken NO bones!

High school was difficult with girls and friendship groups. Fortunately, I was sporty and was chosen for the rounders, athletics and hockey team. Once we were playing hockey against Queens in Chester and I got hit full on in the eye, my mum took me to the butchers and bought a steak and put it on my eye, another fabulous bruise. Another time, we went ice skating with school, it wasn’t the best ice rink, so many of us fell over and ended up at A&E bandaged up yet again. The next day we had our rounders tournament with 4 of us in bandages from the night before and yet WE WON! Blue house won!

Age 13 I started my periods and about a year later I was having lots of pain and heavy bleeding, I kept on having to take a letter into PE to excuse me from showers (people were suspicious) it’s not like you can show your mates or your teacher to prove it. I was put on the pill for heavy periods age 14. After school I did nursery nursing NNEB diploma in childcare. I was a nanny for 3 years then a supervisor of a day nursery. It was a very demanding job 8-6 and I was having abdominal pain each month around the same time as my period. I was diagnosed with irritable bowel syndrome (IBS).

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. I had to sleep in the bath for the last 10 weeks of my pregnancy to ease the pain. I also developed Bell’s Palsy at 39 weeks pregnant 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. I had Sam but was upset as my face was still droopy and lop-sided. 9 months later I was sent to the Salford Royal for a steroid injection and MRI in my back. 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.

I had trouble getting pregnant a second time and had fertility treatment and Robyn was born in the Millennium. She was beautiful, huge brown eyes and perfect. Shortly after she was born we noticed she had jaundice and was kept in hospital for 10 days. She also had a huge birthmark on her arm and a sacral dimple. My 3rd child, Darcey, was born 5 years later. I was so delighted. She has huge green eyes, blonde and looked like the petit filous child off the advert.

Robyn was diagnosed with Hypermobility age 14 and as a result I was sent to genetics for suspected Hypermobile Ehlers Danlos Syndrome (hEDS) or EDS type III as it used to be known. It was confirmed at genetic in Chester under Liverpool Women’s department. With my diagnosis came understanding – EDS 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 and in the correct boxes, tins in the correct order and labels facing forward. I don’t like sudden loud noises but like loud music in the car when I’m driving. My children show some 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, along with malfunctions of the immune system (MCAS) and nervous system affecting the heart, breathing, sweating, digestive system, etc. (PoTS).

EDS has no cure but the effects can be treated and, knowing what is the underlying cause of the other conditions can really help. Check back here soon for part two of my blog on diagnosing EDS.

For more information about EDS visit Ehlers-Danlos Support UK or the Ehlers-Danlos Society.

image of Caroline Bailey and her two daughters

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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