I thought I’d use my platform for something a little different this time. I’ve used it before to shine a light on and dispel some of the strange facts and myths surrounding Autism Spectrum Disorder, and how life on the spectrum affects me on a day to basis.
What I want to do is raise some awareness toward another condition that is very close to my heart, called Ehlers Danlos Syndrome. Some of you maybe aware of it, but for those of you who are not familiar, I’d like to try my best to briefly explain what it is and what it involves.
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls, but also gums and nails. There are various different versions of it, which is why it’s a syndrome, but it is a very disabling and challenging condition.
Symptoms include:
- Over-flexible joints
- Loose joints that dislocate easily
- Joint pain
- Stretchy and fragile skin that bruises easily
- Soft and velvety skin
- Non-healing damaged skin
- Muscle pain
- Extreme tiredness
- Dizziness
- Increased heart rate, especially after standing or eating
- Digestive problems such as heartburn and constipation
- Urinary incontinence
- Heart valve problems
- Protruding eyes
The signs and symptoms of EDS vary by type and can range from somewhat mildly loose joints to life-threatening complications.
Treatment
There is absolutely no cure for Ehlers-Danlos syndrome. Only treatments that aim to manage the symptoms and the awful pain, while preventing any serious complications.
The reason I’ve shared this information with you, dear friends, is that my wonderful wife, who you all know as Mrs Bob, has got EDS, and I’ve heard so many people say things like “Oh I hope it gets better soon”, or suchlike. While I understand that these people have the very best intentions and aren’t meaning to be hurtful when they say these things to her, it upsets me, and her. It’s like saying to me, “hopefully you’ll become less autistic”.
She struggles on a a daily basis with pain and her joints – especially her knees (which have to be specially taped up to help against dislocation, which still happens regularly. She can on a good day, manage to sleep in bed for 2-3 hours, but the rest of the time she has to sleep downstairs on her recliner. Some days she can’t get upstairs, even with crutches. She goes for regular short walks with a crutch every day, but if her knees are out, she can’t, and this has a knock-on effect on her back issues from a car accident in her early 20s.
She is always in some pain, but still tries to smile, and do the best she can without complaining, even when she knows that she’ll suffer the following day as a result of doing too much. She knows it won’t ever get better, but starts each day as new. I think it’s because she does this that most people don’t realise the daily struggle she and others with EDS have.
So please, spare a thought for those of us whose daily existence can be an uphill battle, that is often invisible.
Stay Safe X
The Ramblings of Bob Christian 