Ehlers Danlos Syndrome Awareness Month

30 May 2014

So this month has been Ehlers Danlos Syndrome (EDS) Awareness Month and as I was crazy busy with exams and moving back home I didn't get around to writing any posts so I'm going to fit 2 into the last 2 days. Sorry this is gonna be a long one. 

EDS is a hereditary genetic condition that I have and my dad and little brother also have it. We are pretty awesome and I think it makes us extra amazing however it does have some irritating down sides. I'm gonna explain what it is and tell you a few ways it affects me. I would love it if you could read and share as not many people know about it and we are treated like frauds including by some medical staff.

It took me 10 years to get diagnosed with symptoms from birth and I was lucky. Thats an early diagnosis in the EDS world. I was accused of faking it, attention seeking and my mum was accused of making it up and having munchausen syndrome and then my parents were accused of child abuse. We were then told I had leukaemia or bone cancer. A surgeon then wanted to cut off my legs because they hurt so obviously that would solve all the problems. It was just luck that the last Dr my mum was willing to take me to recognised the symptoms as I was walking in the door. 

EDS is a rare inherited condition with disruption of the strength of structural proteins in skin, ligaments, cartilage and blood vessels, leading to fragility of connective tissues. As EDS effects the connective tissue every single part of the body is affected.

There are several types:
Classic Hypermobile type - Most common and often not diagnosedVascular type - Overall median lifespan is reduced to 48 years.Kyphoscoliosis type - early progressive fibrosis and severe motor delay.Arthrochalasia type Dermatosparaxis type 

I have the Hypermobile type with some of the symptoms of classical merging. Symptoms from the different types do tend to cross over.

So my main symptoms are

- Dislocations, a lot of dislocations. I stopped counting the times my knees came out after it got beyond 20 in about 6 months. I can dislocate a finger doing up buttons, my wrist came out of place when I wasnt even doing anything the other day.

- Subluxations. This is when the joints partially come out of place. I get these daily and sometimes hourly.

- Pain. My muscles & ligaments have to work so hard to keep me in place that I ache constantly. Imagine how much you ache after a workout, well thats what my bod goes through just lying down. The dislocations and pain is why I use a wheelchair

- Fatigue.  Now Im not just talking about being a tired Im talking about being completely exhausted without actually having done much

Insomnia. We have issues with our adrenalin production so sleep is very hit and miss. Most nights I get about 6hrs broken sleep but I have weeks where I only get about 3.

- Fragile Skin & Easy scaring. I have a scar from where I accidentally scratched myself, a shaving scar and a scar that I have no idea how I got it

- Poor Circulation. My circulation is so bad, my hands and feet are permanently like blocks of ice and you will quite often see me rocking the shorts and fluffy socks look. It will catch on one day 

- Digestive System Issues. This results in nausea, pain, acid etc. Some weeks I can barely eat. I often live on mashed potato or brown rice. 

- I have to take at least 10 tablets a day and then painkillers on top of that just to function and not be left in a bed bound crippling mess

There are so many more symptoms, the list goes on and on and every person with EDS is different. Everyone has different symptoms with different severity.

I also have to wear some really attractive supports and splints to stop me falling apart some days 








I don't want to be too negative though so here's a few plus points

- I have met some amazing people on twitter with the same or similar conditions and have made so many new friends

- I can use my feet as extra hands. Helps with wrapping presents, picking stuff up without bending and as a baby I even used to drink my bottle with my feet


- When shaving my legs and painting my toenails I can get bring the leg to me. I have no idea how non bendy people do that

- I don't have to wear shoes in summer when Im in my wheelchair so no tan lines or I can wear super massive heels and not have to attempt to walk in them

- I have a fabulous silver walking stick with pink spots. I mean c'mon it is pretty cool

- I can scratch my own back

- My body is pretty amusing. The amount of people that freak out when they first notice how far my knees bend back makes me laugh every time.

- We have super soft skin so look younger and our skin has been compared to velvet. 

- My medical knowledge is pretty good. I know so many long words which is always impressive right?

- If anyone ever annoys me I just have to warm my freezing hands up on their nice warm back and they squeal and I feel instantly better

- I can also make smiley faces out of my meds


If you want any more info this is a really good Site and also has a message board you can sign up to to

If you have any questions or have been diagnosed or know someone who has and feel lost please leave a comment, email me at mermaidindisguise@outlook.com or you can find me on twitter here

Beth...x

No comments:

Post a Comment

LAYOUT BY MINTY FOX DESIGNS