What is E.D.S?

Hey Everyone
How are you all? Enjoying the sun?

HAPPY MAY EDS AWARENESS MONTH: 
So incase you couldn't guess, for today's post I thought I would talk to you all and explain a little bit about Ehlers-Danlos Sydrome (E.D.S). It is a condition I have been diagnosed with and one that is not really known or understood by people. I did a matching Youtube Video 
explaining E.D.S so if you are more of a watcher and listening than a reader, I hear ya but also you can click HERE and it will take you to it. If you like to read or do both.... Lets do this! 


Ehlers-Danlos Syndrome or E.D.S as it is known for short is an inherited condition (but it could be that you didn't inherit it and are the first to get it - everything gotta start somewhere eh?) that affects the connective tissues in the body. The connective tissue is made up of cells, fibrous material and a protein called collagen. It is the ''glue'' that is responsible for supporting and holding together the structure of the skin, blood vessels, bones and organs. Nothing major.. you know! 

There are 6 types of EDS and depending on what type you have is dependant of which gene is faulty and making the connective tissue weaker. EDS is one of those conditions where it can vary hugely between patients and could be that it is relatively mild in the way it affects the person to completely disabling. In some of the rarer cases severe type it can be life-threatening.

These are the 6 different types of EDS;
CLASSICAL EDS - Although one of the main 3 types of EDS, it is rare and not seen very often at al. It affects the skin more than anything but still comes with a very similar set of symptoms to many of the other types of EDS. 

HYPERMOBILITY EDS - This type of EDS is also known as Type 3 (and is the most common type) and is often thought to be very similar to joint hyper mobility syndrome. Though you still have some skin issues such as bruising easily, there are more problems with the joints and "inside the body" issues which we will go into. 

VASCULAR EDS - Again, although it is one of the main 3 types of EDS, it is rare but is often considered to be the most serious. It affects the blood vessels and internal organs which can cause them to split open and in severe cases lead to life threatening bleeding.

ARTHROCHALASIA EDS - This is a rare type of EDS and its major diagnostic criteria is severe joint hyper mobility with recurrent sub laxations (dislocations) and more to the point hip dislocation.

KYPHOSCOLIOTIC EDS - This is a very rare type of EDS and is a lot to do with the curvature of the spine and weak muscles as well as joint hyper mobility and fragile eyes.

DERMATOSPARAXIS EDS - This also is a rare type of EDS and has similarities to the Classical EDS in that it has a lot to do with the skin. It is severely fragile and can often sag. Hernias are often related to this type of EDS. 

What are the symptoms I hear you screaming (well you might not be, you might just be thinking it but details details)? Symptoms vary between people as well as slightly between the different types here are the general symptoms:

Symptoms
- Easily Bruised
- Increased Joint Range
- Stretchy Skin
- Soft Skin
- Extreme Fatigue (tiredness) 
- Digestive Problems (Gastroparesis is now often being associated with EDS)
- Bowel Problems
- Bladder Problems
- Dizziness/Lightheadedness (PoTs or similar are often associated with EDS patients)
- Organ Problems
- Muscle & Joint Pain
- Fragile Blood Vessels (mainly associated with Vascular EDS)
- Skin Slow To Heal (mainly associated with the 3 main types of EDS)
- Curving of the Spine (mainly associated with Kyphoscoliotic EDS)
- Weak Muscles

Now these don't cover all symptoms and the severity of each symptom can vary from person to person.

Is it just me or can I now hear you shouting how do they diagnose EDS? Just me? Oh well I shall tell you anyways. 

There aren't really any particular tests they can do to diagnose EDS it is more based of symptoms and what the doctor can see. There is a genetic test that can be done for all of the EDS types apart from the Hypermobility type as the problem gene as not yet been identified meaning they can't test for it. Doctors will use this test to confirm a diagnosis that they will make based on symptoms and what they can see. For the hyper mobility type of EDS, the Beighton Score Test is often used. It is a score out of nine where you get points based on the flexibility is certain areas. The different things you get points for are: 

The results of this mixed with other symptoms is how a doctor would diagnose the Hypermobility type of EDS.

There is unfortunately no cure to EDS just ways to manage and control symptoms to make life as easy and as least painful as possible. The most common forms of managing and controlling symptoms are; 
- Medication for pain
- Physiotherapy - to help ease joint pain and to give gentle exercises to strength the muscles to decrease pain but increase the amount you can use the muscles. They often help with supports such as wrist supports, knee supports, finger supports etc..
- Occupational Therapy - to help adapt things at home and in life to make it easier and safer for you. For example if you struggle with lightheadedness, they will help supply hand rails around the house or in the shower or a shower seat to give you that little bit of independence and safety which makes things a little easier to get by.
- Counselling - as with most chronic illness that are with you for life and change your life in big ways, it can often affect the person mentally, so, some people go to counselling sessions to just talk through life and they are helped to come to terms mentally with the condition and any changes they've had to make. Or... well anything they want to discuss with the counsellor that they feel. 
Another way I found that really helps if counselling isn't for you is to journal things. Whether it be a public one or a completely private one, sometimes just writing stuff out and getting it off your chest can really help. Sometimes when you write things out they don't seem as bad or as major as you first thought when you compare it to other things in life people deal with and that. Again, won't help everyone but thought I'd mention it incase counselling isn't for you or didn't work for you - just something you can try from the comfort of your bed or anywhere! 

Why Zebras?
The term "Zebra" is used in reference to a rare disease and condition and is the mascot for EDS and we as sufferers are known as medical zebras. The reason for this is medical students throughout their training are taught 'when you hear the sound of hooves, think horses, not zebras', they are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions (there of course are the odd exceptions - occasionally... very occasionally). BUT, many medical professionals seem to forget that 'zebras' DO exist. It does unfortunately mean getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Sometimes it takes time and can even take 100 doctors before you find the right one for you. Some doctors just refuse to see past the 'normal' black and white textbook but lets be honest.... there is nothing textbook about us EDS lot so sometimes we just gotta wait and find that doctor who doesn't like using his textbook. But, we know our bodies better than anyone... so don't give up! 

Now, I know that I do activities or certain things that I am probably NOT supposed to do due to risks of dislocations or whatever, but my moto in life is "you only live once so do what you want to do, not what you are told you can do". There are things in my life I have had to change and adapt to because of my illnesses but I will never let them beat me. Sure, I have days where it does just get too much and it does beat me but everyone has days like that just to different extremities. And sure, some days I end up in A&E unconscious in resus when my body has just had enough and I can't show my body who is boss.... but then other days I show it who's life it is and that I will do what I want (even though I might not be in such a great way after - sorry mum and dad! :) .). I've learnt over the past 4/5 years since


my health got really bad that no ones life is perfect, everyone has their problems they have to work around. Everyone and their lives are different. There is no 'normal' life. It is what you make it. So even if you are stuck in bed, do something you've always wanted to that requires nothing but a laptop or a book etc. That is how my blog and youtube started... when I was too sick to continue my acting career and too sick to be going out all the time! And now look.... I freaking love doing them and feel amazing when I hear that I have managed to help someone feel less lonely or find the confidence to go to the Dr etc. Life is what we make is so even if you do get diagnosed with EDS or any other Chronic life condition, don't let it stop you... just change you plans to suit your current life styles and situation. Nothing is for certain in life and things always change as do plans. So why see illnesses as any different!? :)  And hey, we are mentally stronger than any of who doesn't have these types of obstacles in life.... living with pain everyday is not just a skill but a superpower!! 

Now, although I do have EDS (as one of my many illnesses), I'm not a trained specialist (even if I do often know more than most doctors), so don't take my word entirely or try diagnose yourself. However, if any of the above does sound very close to home, I hope this has helped you in whatever way it is!

If you or someone you know has EDS, what things do you find that eases symptoms? 
There is also a great UK Charity and website for help and advice so click HERE to go to it! 

If you have any questions or need advice, I am more than happy to answer to the best I can on any of my social media places or in the comments here. I will link below each social media if you would prefer something other than the comments on here. 

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That is all for this post, I hope you found it useful whether it be from the sufferers point of view or someone who knows someone with EDS or a parent or just because you were interested in learning (you're awesome). Whatever the reason, I hope you found it helpful and useful. 

So, until next time.

Don't forget to raise awareness and...
Stay Strong
<3