Ehlers-Danlos Syndrome

Focus on…Ehlers Danlos Syndrome

I recently read a brilliantly informative article about Ehlers Danlos Syndrome, a condition I knew little about. So, to educate myself and any other therapists / clients who are interested, I asked the writer, Louise, for permission to share it. She also has a fabulous blog which I have linked at the end of the article. So, over to Louise…

HI Everyone :)

I wanted to share a post on this for a while and seeing as it is Ehlers-Danlos Syndrome Awareness month I thought now would be a great time! Hopefully this will spread the word a little and I’ll also try and include some info if you have a client with this condition and hopefully I’ll make some new EDS friends through this forum if there are any fellow spoonies out there!

What is Ehlers-Danlos Syndrome (EDS for short, Ehlers Danlos)?

Ehlers Danlos Syndrome is genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms, the effect on the body is widespread and not limited to one body system. There are different types and classification of the condition and a vast spectrum of symptoms are experienced by our community. (Taken from http://www.ehlers-danlos.org/)

So that’s the official wording out the way, i’ll try and explain a little better below..

What does it mean?

Many people have different experiences with EDS but for the most part we suffer from joint laxity meaning dislocations and subluxtions (partial dislocations) are common, even just sitting on the loo! So, at some point or another you will most likely see us strapped up or with a walking aid or wheelchair. We also have SUPER soft, silky skin, I always get ID and have no wrinkles yet !! :D

It is also INCREDIBLY hard to get a diagnosis as many doctors, even specialists are not aware of the condition (obvs there is hundreds of thousands of conditions so not everyone can know everything!), my mum was diagnosed in her early 50s and it took me until the grand old age of 26 to get my diagnosis (18 months ago) and even now it is still a long old process to get to see the right people about the right things and I am still in and out for testing and adding to my list of diganosis’ BUT after various bouts in and out of hospital since I was around 11 I am now glad to be getting some answers!

I used to feel awkward or embarrassed when going for hair / beauty treatments as I didn’t want to ramble on (believe it or not) about my conditions so I used to avoid getting my hair done just to avoid wash basins, now I’m like give me those towels and I’ll sit on my trainer to prop myself up! So here’s hopefully some things to make you aware so if you ever have anyone with EDS if you maybe just prompt them with some of the below you can make the treatment more beneficial… i hope you take that in the way it’s meant!!

Treating someone with EDS – BEAUTY

For more invasion treatments as I’m sure you all would, get a specialist letter to say its OK – it’s more than likely your client would have checked first! But in general…
– NAILS – As our skin is super soft and stretchy take extra care when filing, buffing and nipping cuticles, near enough every time I do my nails I cut myself in some way! My nails are super thin as well so I do the most gentle buff as they split. I’m fine with nail extensions but overlays just won’t last (even when i’ve not done them), I always have acrylic or hard gel.
– WAXING – As the skin is soft and stretchy (see below conditions), when waxing make sure the skin is extra tort (i hope that’s the right word, like when your pulling it so its stretched out basically!), I often look as though I’ve had electrolysis all over and am covered it little blood spots and very red after I get waxed! On that note, I have had electrolysis before and people with EDS skin does scar and bruise easily as it is so stretchy, it finds it hard to heal… I had one small patch in my bikini line and it has scarred noticeably so it’s not something I would have done again, but that’s down to person preference!
– SKIN – Obviously this is just MY opinion but i wouldn’t carry out any peels or anything like that – the skin really is so thin and always use sensitive products – I’ve had MANY allergic reactions to skin products, I always do a patch test 24 hours before now of anything that’s going on my face – I don’t like the leather boot face look on myself!
– MASSAGE – Hard one, get a doctors letter for sure but my advice would be SUPER gentle, especially around the joints, we bruise easily so if there’s any hard knots, try and work them out gently. Most of us have regular physio so I’m sure the client will know what area to target! Also extra pillows and help may be needed from turning from one side to the other. I think also asking if there are any areas to be left, for example, I wouldn’t be able to have anything on my lower back, I have bladder issues and a L5/S1 annular tear in my lower back which causes me to have little ‘accidents’ (see overactive bladder below) so any pressure makes it worse!

Treating someone with EDS – HAIR

Like the skin, the hair is usually very soft and thin I have 6 fellow EDS friends and were all the same.. I have very thin parts around my hair and using a paddle brush is a big no no, it gets so knotty and just snaps off. Tangle teezers are my best friends! My hair also snaps off when it is tied too tightly, I use those curly wirly bobble hair bands now to tie my hair although 80% of the times I usually have extensions in! Tapes and clip ins are the best I would say, my hair comes out so easily and the weight of micro rings and glue seem to cause traction eczema, I just don’t think its strong enough. My hair also seems to take so quickly and lifts to a really high level and me and another couple of girls have also had our hair turn funny colours or patches that just will not lift which I think is caused by medication?? I’ve often been on steroids and take a daily cocktail of drugs and this does 100% change the way my hair takes as all you hair geeks probably know! Sometimes this has caused for it not to lift at all, even after an hour! Lastly, the dreaded wash basin. Many of us have ‘lax’ necks so that means they bend far beyond the normal limits without meaning too, i hate wash basins! They hurt so much! I usually ask for a couple of extra towels to help hold my head up and prop myself up somehow, for anyone mobile, I can’t hold my own head up so I find it easiest just to jump in the shower rather than trying to do it over the bath this causes me to have real bad head rushes!

I’ve rambled on a bit so I’ll try and bullet point conditions that I have which are linked to / associated with EDS, reason for this is there is soooo many I can’t mention them all but I’m hoping that if anyone pops it in the search function this post may come up

Associated Conditions

– Scoliosis – I had a back brace for around 3 years
– Postural Orthostatic Tachycardia Syndrome (PoTS) – Autonomic nervous system dysfunction, so your heart rate, blood pressure. For me, my blood pressure drops very low causing my heart rate to increase which can cause fainting and light headiness (is that a word?!) . I suffer with PoTS most if i was to eat a larger meal, if I stand / walk for around more than 30-40 minutes and in the bath! There is a drug to treat PoTS and it has dramatically improved my life! I can now have baths!
– Small Intestine Bacterial Overgrowth (SIBO) – as it says on the tin! Linked to Gastroparesis, we have ‘sluggish’ digestive tract so it can often get stuck! I swop between having the runs.. and being sick after I get a bit too blocked up! Hopefully that’s not too graphic BUT I want to be honest and open as I can’t hide away from it :) . Many of us have what I call sloshy diets so things that are easy to digest, being gluten & wheat free massively helps me and I mainly eat rabbit food (salad leaves) and soup and chips!
– Vitamin Deficiencies – iron, B12, Folic Acid, Vitamin D & Calcium deficient, I assume this is from where my stomach is sluggish with digesting…
– Chiari Malformation – Malformation of the brain / skull, as our muscles, ligaments etc have ‘stretched’ my cerebellar tonsils have started to descend into the base of my skull, I like to think it’s where my brain is full of so much knowledge it’s just too heavy to hold up! :D . I often get migraines and pressure headaches, theres lots of other conditions linked to Chiari – i’ll save that for another post!
– Overactive Bladder – So the bladder is a muscle, my pelvic floor is basically trying to hold on to itself as it is stretchy so my bladder is also contracted, normally it would only do this when you get the desperate to go to the loo feeling. Because of this I have incontinence issues where I can’t tell I need to go until its too late! OR I can’t go even if i NEED to! Im on a new drug to ‘calm’ it down so well see if that works – fingers crossed!
– Mast Cell Activation Disorder (MCAD) – overactive mast cells – this causes me to come out in lovely red rashes and have allergic reactions to nothing! My face and shoulders once swelled up double the size when I was on a girls holiday in Ayia Napa, I think the hospital there was more scared of me than I was of them! Thank god for hats.

There are more but these are the main ones and I know I have rambled on LOADS!

BUT if even 10 people read this, then 10 more people know about EDS ! It’s all about raising awareness :D

Any questions, fire them away! I’d love to help anyone or make new friends!

Thank you SO MUCH for reading, these are my opinions and I’m not a medical professional, but I am a Hair, Beauty and Nail qualified professional!

 

Click here to visit Louise’s Blog…well worth a visit! 

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