May is Ehlers Danlos Syndrome (EDS) awareness month and since EDS is such a rare disease with very little knowledge, both within society and the medical profession, I want to spread as much awareness of this horrible disorder as possible.
Before I go much further I should recap for some of my newer readers of what EDS is. Taking a quote from a previous post;
‘EDS is a collection of inherited conditions that fit into a larger group known as heritable disorders of connective tissue. Connective tissue provide support in skin, tendons, ligaments and bones. There are different types of EDS, but they have features in common. These can include joint hyper-mobility, stretchy skin and tissue fragility. The fragile skin and unstable joints often found in EDS are the result of faulty collagen, a protein in connective tissue which acts as a “glue” in the body, adding strength and elasticity. Connective tissue provides support to over 95% of the body so there is little that escapes the symptoms’
First of all I am going to explain some of the foundational aspects of EDS. As you can see from the picture above and many other photos you will see if you look up EDS is a zebra, now I know you’re probably thinking why a zebra? I know I thought the exact same thing when I first was diagnosed. However the zebra symbolises rare, just like EDS and the patients suffering from it, and this description from the charity EDS UK explains why:
This phrase is taught to medical students throughout their training. In medicine, the term “zebra” is used in reference to a rare disease of condition. Doctors 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. But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos Syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.’
I can understand why doctors are taught this, none of us would be very happy if we went to the doctor with a sore throat and were told you had a rare illness when really it was just the common cold. However on the other hand, this way of thinking isn’t very helpful for people like me and so many others across the world who have a rare disease. As a result getting a diagnosis for Ehlers-Danlos or any other rare illness is a nightmare and can take years to get answers and treatments. Therefore the more awareness ALL OF US can spread, both in the month of May and the months that follow, is so important and has the potential to educate both healthcare professionals and every member of society. This in turn can hopefully prevent the heartache and distress on individuals searching for a diagnosis AND may help change the hostile attitudes from others and the comments of misunderstanding from the general public towards people like me.
Therefore I’ve decided to do a post for every week in May on a different area of EDS and if possible, I would love your help in raising awareness and educating as many people as possible on this monster of an illness. Hence I hope to cover a wide range of topics such as;
– Getting a diagnosis
– Fact about EDS
– Types of EDS
– Symptoms of EDS
– Attitudes towards EDS and other rare or invisible illnesses
Since I have now covered the basic symbol of “the zebra” for EDS, I thought it would be a good idea to share with you my struggles in getting a diagnosis. It was in 2006 when things began to go drastically wrong, it first started with my feet which kept turning in and as a result led to many falls, the multiple joint dislocations soon followed along with pain and fainting. Although unfortunately my story isn’t as simple as this. The first joints to being dislocating were my knees which rapidly turned into my inability to walk or even stand since putting pressure on my legs would dislocate my knees instantly, causing extreme pain; all of which left me wheelchair bound. During this time I seen countless doctors, orthopaedic knee surgeons and physiotherapists, I also had an operation on each knee in an attempt to stop the dislocations. These operations failed which unknown at the time was a result of my underlying EDS.
However all of this brought many accusations from the medical profession who no longer had an answer to the dislocations; I was accused of faking, dislocating my knees on purpose, wanting attention, seeking drugs, I even was told that I was a troubled teenager from a troubled family and sent to psychologists numerous times. All of these comments caused tremendous hurt to both my family and myself, I just wanted an answer and in reality what we didn’t know at the time was Ehlers-Danlos Syndrome was the answer and could have proved all these accusations as false. Over the next few years other joints began dislocating including my shoulders, elbows, wrist and jaw; other joints became very loose and I had to be extremely careful to avoid dislocation, pain spread throughout my body, fatigue increased and an array of other symptoms began to crop up over time. It was becoming evident that this was no longer just a knee problem, something was wrong and I needed vital answers before things became much worse.
Five years later I gained a diagnosis by a rheumatologist, all of which occurred only through the research and determination of my mum who fought and searched avidly for answers, all of which led to being diagnosed with Ehlers-Danlos Syndrome, before continuing I will say if you want more information you can go back to my “Timeline” posts which can be found in “categories” or by clicking the specific diagnosis post here.
I’m sure you’re all thinking now that once I got my diagnosis a large part of the battle for belief was over, I thought that would be the case too however this was far from the truth. The beginning of this journey began with the rheumatologist who first diagnosed me, there is a two testing scales for EDS and I ended up testing positive so high up the scale that it was evident I had very severe EDS. Yet nevertheless he minimised the true realities of EDS and the struggles I was having, he said to run as much as I want and do anything I wanted and then just relocate whatever joint would dislocate as a result of doing such activities and then carry on. He didn’t take my pain seriously and actually said the words “it would be worse if you had…” which is something no one wants to hear when they’re diagnosed with an incurable illness, living in severe chronic pain daily, having multiple dislocations a day and being wheelchair bound. In fact we later found out this doctor had given me advice which was detrimental to EDS and it was apparent from then onwards I wasn’t going to require any beneficial support in this country.
Unfortunately since my diagnosis my EDS has continued to go down hill, there was no expertise on EDS in Northern Ireland and I am now looked after in a specialist hospital in London and yet despite having a diagnosis the hurtful comments haven’t fully stopped. In this country I am still accused of faking, I was told my shoulders weren’t dislocated when in fact they were and have been treated like I’m doing this to myself. However the reason this is happening is because there is no education on the condition and this is why awareness is so important. Due to all this and doctors not having the expertise in this country I have to attend London for frequent hospital admissions, thankfully I receive fantastic care in London where all my team understand EDS and treat me with what is appropriate for me along with taking all my symptoms seriously. However if there was more awareness and education I wouldn’t have been treated as awfully as I have been here and I may not be as bad as I am now due to London only seeing me now in my adult years.
It is clear awareness can change views, attitudes and educate; it can allow for better treatment and quash such horrible remarks and most of all it can help people like me get the treatment we deserve, make what is invisible visible and show EDS for the harsh truth it is. Just because I’m medically rare doesn’t mean I should have to listen to rude comments, lack of understanding and lack of help. My illness is just as real as any other and every Ehlers-Danlos sufferer deserves to be treated with the respect and dignity which any other individual suffering from any other illness receives.
We need successful awareness to stop the discrimination of being rare.
I am thankful that despite the awful things I have mentioned above God has been my rock through this all and I know and trust He will give me the resources to spread awareness of my story and EDS as far as possible for nothing is impossible with God.
“For with God nothing will be impossible.” Luke 1:37
Thank-you to everyone who has read this post and I would ask if you can help to raise such important awareness with me in anyway possible.