Ehlers-Danlos Syndrome is complex, to say the least. With 13 different types of the syndrome - ranging from the more common hypermobile EDS, to the extremely rare vascular EDS. Defining and categorising it can often be as difficult as the diagnosis itself. Today, we want to look at comorbidity, mental health and life as a zebra.
See our previous blogs on Ehlers-Danlos Sydrome:
While around one in 5,000 people are thought to be affected by the most common form of EDS, many recent studies are suggesting it may be more prevalent, to the point where specialists are even reconsidering it being a rare disease at all.
One study done in Wales in 2019 shows that it may affect as many as one in every 500 people (although this may not be indicative of global trends).
Even though the true figure is not conclusive, it’s inarguable that it’s more common than has been for a long time, and more likely than not, you probably know someone affected by it.
While there are a range of symptoms typical with most forms of EDS there are a wide range of comorbidities that affect those suffering from EDS.
What is a comorbidity?
Medically speaking, a comorbidity is the presence of at least one other condition that occurs at the same time as the original issue, often exacerbated by it (for instance, hypertension is a comorbidity associated with diabetes and heart disease).
EDS often brings along with it many possible comorbidities, which means that even though the traditional symptoms of EDS may seem simple at first, the expression of the disease is anything but.
Some of the more common comorbidities for EDS include:
- Chronic fatigue
- Sleep disorders
- Nerve pain, numbness, pins and needles
- Cervico-cranial instability (complex problems caused by instability at top of neck)
- Gut dysmotility (sluggish and slowed digestion)
- Mast cell disorder
- Bladder dysfunction
- Dental issues
- Cardiac problems
This list is by no means exhaustive, and there’s pages of patient reported comorbidities that have been observed but not properly studied by medical professionals.
Image credit: Hypermobile Yogi.
Mental health and life as a Zebra
The effects of EDS aren’t only caused by symptoms and comorbidities. Social isolation, a lack of medical understanding and misdiagnosis can all come together to make what is already a difficult journey all the more overwhelming.
Like many groups of people with unique medical conditions, people with EDS across the world have formed strong communities to support each other and offer advice they’ve found to be helpful.
These people have adopted the title of Zebra (there is a saying that “sometimes when you hear hoof-beats, it really is a zebra”. The goal is that EDS will be properly recognised within the medical community).
The mental health battle for those with EDS is all too real, primarily because of the daily struggle of the symptoms and comorbidities, combined with a struggle to get recognition or diagnosis.
To provide an insight into EDS, we spoke to Mel
Bauerfeind: How does EDS affect you?
Mel: Even though I wasn’t officially diagnosed until I was in my mid-thirties, I’ve been affected by the symptoms of EDS since I was an infant. My joints often dislocate from daily activities like brushing my teeth, getting dressed and even just sleeping.
I’ve struggled constantly with digestive issues, urinary issues, allergies and anaphylaxis. There’s a constant fatigue and exhaustion, coupled with chronic pain all the time.
The mental health struggle of it has been back and forth, and though I’m incredibly proud of where I am now, it’s been really tough some days to just get out of bed. While I still enjoy my hobbies, in particular dancing and sports which both bring enormous happiness to me, finding the energy and resilience to engage in them can often be difficult to even think about.
Bauerfeind: What have you had to change to cope with EDS?
Mel: There are so many facets of my life that I’ve been forced to change. One of the big ones is diet. I need to be incredibly careful what I eat and drink to avoid either feeling sick and bloated for days or having an anaphylactic reaction.
Even if I’m not allergic, my body can often react poorly to something. This has led me to avoiding eating at all sometimes, and often I avoid going out or don’t get invited at all, especially when I can have such a severe reaction from the wrong sauce or just touching someone who ate seafood - that I need EpiPens and resuscitation.
I used to work full time, study, play sports 5 days a week and volunteer, but now I’m on a reduced return to work medical plan and can only work 4 hours a day, which is still exhausting.
Another difficult change has been the financial strain. The cost of medications, appointments with specialists like cardiologists, urologists, immunologists and more, it’s hard to have enough left over to be able to afford even basic groceries.
Because of the varying rules of subsidies and the lack of recognition of EDS under many plans, I’m not able to qualify for any financial support, which makes everything harder.
Being an advocate for EDS, seeking out education on it myself and engaging with the EDS community have all been things I’ve had to do to help, and being honest with my GP and asking them the right questions have all helped.
Bauerfeind: What are the main ways you manage the symptoms and issues?
Mel: Managing my diet to deal with digestive issues, and combining that with medications has helped a lot. Avoiding known triggers for allergies and being wary and educated on the medications I’m on, as these can sometimes have dangerous side effects if combined.
Exercise and physiotherapy have been a huge help. Too much rest can actually have a detrimental effect on people with EDS. By building up muscles and strength, I’ve been able to counteract some of the effect of faulty connective tissue.
Finding a good physio who can help me to do this safely and effectively has made all the difference. On top of this I’ve got crutches, slings, braces, tape and more all at home for daily use.
Finally, self-care, acceptance and self-compassion have all been crucial to me long-term. The struggles of my condition can overwhelm me, so focusing on my mental health has helped me to not only endure day to day, but to enjoy life amidst it all.
What advice would you give others who have EDS?
Mel: Look for professionals who will actually listen to you and are either educated on EDS, or are willing to research it and learn it with you. Accessing resources like the Ehlers Danlos Society helps enormously, both for people suffering from it as well as the clinicians treating them. Find a good physiotherapist and a good GP, ones who will listen to you and work alongside you to manage the condition long term.
If you have EDS or think you may have it, speak to your GP and ask for a referral to a geneticist or other specialist to be tested for EDS. Bauerfeind are passionate about engaging the community and helping them with health, mobility and awareness.
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