Luisa, a lifestyle blogger and vlogger for ‘Chronic Style Disorder’, writes about her experience of Ehlers Danlos Syndrome and why raising awareness is so important!

This May is Ehlers Danlos Syndrome awareness month. There are lots of illness awareness months, but of all the conditions I’ve come across – EDS really does need further awareness. I’m not just saying that because it’s a condition I have, and have had all my life (as it’s a genetic disorder). Even Professor Grahame, one of the leading specialists for EDS has said it’s been one of the most overlooked and under researched conditions of the 20th century. Although I have known about the condition for many years, as many friends of mine suffer from it; I was only diagnosed six months ago after having a lifetime of pain and six years of relying on mobility aids.

So what is Ehlers Danlos Syndrome?

EDS is a group of genetic connective tissue disorders. There are currently 13 types of EDS – Classical, Classical-like, Hypermobile, Cardiac-valvular, Vascular, Arthrochalasia, Dermatosparaxis, Kyphoscolotic, Spondylodysplastic, Musculocontractural, Myopathic, Periodontal and Brittle Cornea Syndrome. The most common type is Hypermobile- Ehlers Danlos Syndrome (otherwise known h-EDS). The most common symptom of all types of EDS is joint hypermobility. This means that the ligaments of the joints are extra stretchy. Which on the face of it might just sound like we’re awesome at yoga. What it really means is that we are very prone to subluxations, dislocations, chronic pain and ligament damage. The stretchiness goes way beyond just affecting our joints. It can have a negative effect upon our organs, causing prolapses, hernias, gastric issues, problems with scarring, and healing. Infact there can be comorbidities within almost every system within our bodies. It is partly due to the lack of research and the diverse range of symptoms and co-existing conditions, that it often takes years to be properly diagnosed. For me, I was first diagnosed with growing pains, then Fibromyalgia, followed by Chronic Pain Syndrome, and Benign Joint Hypermobility Syndrome, before doctors finally came to the conclusion of EDS. The condition affects around 1 in 5000. It is still seen as a rare condition. Doctors often use a phrase – when you hear hoofbeats, think horses not zebras. This is meant to mean that they need to consider the more common conditions first. But as EDS is uncommon, the zebra is often seen as the mascot animal for those with EDS. Some of us also end up with zebra stripes of our own – as we frequently develop stretch marks!

How does EDS affect people?

Most people would say that the two symptoms that affect them the most are pain and fatigue. Our muscles have to work hard to keep the joints together, as well as dealing with painful dislocations. Many people have to use mobility aids, and some are completely unable to weight bear. Others find that with the use of splints and physiotherapy they have relatively few symptoms. As with many chronic conditions, many people find pacing has become a cornerstone of their life.

EDS affects me in many ways. I have constant chronic pain in many parts of my body. I get easily fatigued – sometimes getting out of bed is too much. I have had more A&E visits than I care to remember due to dislocations. I have become very reliant on mobility aids. I have gastric emptying issues – and frequent bouts of nausea. I suffer from migraines. I have symptoms of autonomic dysfunction. Most recently I have also suffered from a complete loss of power in my legs. I’m unable to weight bear, stand or walk and have become totally reliant on a wheelchair. Thankfully my friends have started a crowdfunder to fund a specialist electric wheelchair which will hopefully allow me to be mobile again. One problem many people with EDS come across is issues with accessing the appropriate services. This is partly because it’s not a widely known condition, and for the most part, it’s invisible. There are no visible deformities, and no one can see pain. We often get comments of “but you don’t look sick”. Comments like this, although maybe well-meaning, only further demean us and diminish how serious this condition can be. It can and does kill. Vascular EDS in particular can cause spontaneous arterial rupture, dissections and aneurysms.

What treatment is there available for EDS?

To be frank – there isn’t any. There is no cure for EDS, and there are no effective treatments. Although many find some benefit from physiotherapy, orthotics and pain relieving medications, others struggle on a daily basis to perform basic tasks. EDS research has been under-funded and disregarded by the majority of the medical community. It’s about time that both the medical community and the general public had a better understanding of EDS!

What support is available?

There are two main charities which provide support to those with Ehlers Danlos syndrome. Ehlers Danlos UK, which provides information on EDS, online forum, helpline, and local support groups and HMSA (Hypermobility Syndromes Association), which also provides information and local support groups. Wheelybrits is a fantastic group on facebook, which supports those who are full time or part time users of wheelchairs and scooters. NHS support may be available through your GP, but there are also many private specialists.

What can people with EDS do to help themselves?

Being well informed is very important. Accessing physiotherapy (and doing it regularly) is also helpful. But don’t feel like you are giving up by choosing to use mobility aids. They can enable you to continue to do most (if not all) the things you did before. Choosing the right one is important! I found the Flexyfoot ferrule to be really helpful, as it aided my balance, and it also absorbs the shocks which caused pain in my wrists and shoulders.

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