May marks the month of Ehlers-Danlos Syndrome (EDS)/Hypermobility Spectrum Disorder (HSD) Awareness Month, a condition that is very close to my heart.
EDS and conditions secondary to it have seen me in hospital, having to use a wheelchair, require major surgery, rely on multiple medications daily, have to intermit from Uni and ultimately turn my life and the lives of my family upside down.
"The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. The stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family."
I’m fortunate enough that I’m the only member of my family with this diagnosis, but that does pose the question of where it has come from? The hugely varied presentation of symptoms amongst us individuals with the same diagnosis was so evident to me when I attended the EDS/HMSA conference last year.
Recovering in hospital
For me, the affects of EDS include me having to use a wheelchair, fainting frequently due to PoTS, my bladder doesn’t work so I’m awaiting some type of surgery on that, my bowel doesn’t work which led to my ileostomy, my joints dislocate daily, my swallow function is impaired and since my operation my stomach has been rejecting all food so I'm currently using NG tube for nutrition It’s fair to say that since I’ve had my EDS diagnosis it’s been a journey… a relentless one.
There may just be one diagnosis of Ehlers-Danlos in my family, but my whole family feel the impact of it.
The month of May aims to improve awareness and knowledge of Ehlers-Danlos Syndrome and Hypermobilty Spectrum Disorder, in addition to raising vital funds. EDS and HSD is hugely underdiagnosed, which is where the zebra symbol originates from; in medicine, the term ‘zebra’ is used to refer to a rare disease and throughout medical school, students are taught, ‘when you hear the sound of hooves, think horses, not zebras’. This means that doctors learn to expect common conditions, and forget that zebras do exist, so getting a diagnosis and treatment for these rarer conditions such as EDS and HSD can be difficult.
There are many things that people can do to get involved in EDS/HSD awareness month. These include;
Using the awareness presentations on the EDS UK website to gain a better understanding of the condition and to share the knowledge with others.
Organise a fundraising event for EDS UK; fundraising packs can be requested from their website.
Volunteer for EDS UK in various roles that they have available. These include becoming an area coordinator, working in the office or helping test new information for the website before it is published.
Recycle your old stamps! I save them all year; it doesn’t take any time at all to cut or tear them from envelopes, save them up and post off to EDS UK, the address for which can be found on their website here.
I long for the day where more individuals know about these conditions, more research has be done into them and ultimately a cure is found; EDS awareness month is a great opportunity to work towards this dream.