While promoting my Ko-Fi page after I saw a prompt to do so on Twitter in a Ko-Fi thread, I randomly came across @LagerdahlPhoto who told me it was Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. I’d only heard of the latter, so I asked if @LagerdahlPhoto could tell me a bit more about EDS, which they were only too happy to do.
After reading the information @LagerdahlPhoto shared with me, I contacted The Ehlers-Danlos Society on Twitter to see what I could do to help spread awareness. The Ehlers-Danlos Society was kind enough to share a link to their awareness campaign so I could help spread awareness. Anyway, to cut a long story slightly shorter(?), this was a really long way of saying I took up the challenge of spreading awareness on EDS and HSD for their awareness month, which is this month, May, for future reference.
One of the main problems with EDS and HSD and why awareness is important is because the average time to get these diagnosed correctly is 10-12 years or even decades for some (The Ehlers-Danlos Society), which is an extremely long time to wait. When you think about the health issues that come with having EDS and HSD, then that wait for finally getting the right diagnosis hits even harder.
Doctors just don’t seem to be correctly trained, if at all, in EDS and HDS, which is why it can take so long to get a diagnosis. It can take a lot of consultations with medical professionals from different fields before EDS or HDS is hypothesised as the real health issue (Castori, 2016). I’ve had a similar issue with getting my own health issues diagnosed.
If I hadn’t had had an appointment with this one neurologist who made a referral to a specialist even though I didn’t meet the minimum requirements, I would have never got my reactive hypoglycaemia or PPPD diagnosis. Nor would I still be under investigation for PoTS and other autonomic disorders some six years after that appointment, although my symptoms first appeared in 2007, so I’m still waiting.
The Ehlers-Danlos Society has highlighted the crux of the diagnosis problem, which is that EDS and HSD are multi-systemic conditions that can go unconnected for years and even be misdiagnosed. Because of this, there are delays to treatment, can result in unnecessary surgeries, or people get the wrong kinds of treatments. Going through this ordeal can also take a toll on a person’s mental health as they seek answers and support for their health issues. These conditions are lifelong conditions, so it’s easy to burn out and give up if you’re spreading a decade or more fighting for your health issues to be taken seriously.
What Are Ehlers-Danlos Syndromes (EDS) And Hypermobility Spectrum Disorder (HSD)?
Ehlers-Danlos Syndromes (EDS)
First, let’s start with a quick bit of information on the human body. In order for our bodies to keep our organs and tissues in place, whilst keeping them separate yet connected, our bodies use connective tissue. The connective tissue works like the mortar between bricks, holding everything in place (The Ehlers-Danlos Support UK). This is why EDS is a problem because connective tissue is found throughout the body, in our skin, muscles, gums, eyes, tendons and ligaments, blood vessels, organs, the list goes on (The Ehlers-Danlos Society).
EDS is an umbrella term for a genetically heterogeneous group of hereditary soft connective tissue disorders (HTCTDs) featuring joint hypermobility with other possible complications, such as abnormal skin texture due to skin hyperextensibility and fragility of the internal organs and vessels (Castori, 2016 and Malfait et al., 2017).
However, it is possible to develop EDS through spontaneous (de novo) genetic mutation within the egg or sperm cell, or soon after the egg has been fertilised, meaning it’s possible to get EDS without inheriting it from a parent (The Ehlers-Danlos Society).
In 2017, The International EDS Consortium (Malfait et al., 2017) proposed a revised classification of EDS which recognised 13 subtypes. However, since then, the EDS subtypes have grown to 14, with a new one being added in 2018 (The Ehlers-Danlos Society). Of the current 14 EDS variants, hypermobility is one of the most common with 35% of people with EDS having Hypermobile Ehlers–Danlos Syndrome (hEDS; Karthikeyan and Venkat-Raman, 2018), it’s also the most problematic variant due to its similarities with HSD and chronic pain (Castori, 2016).
To find out more about these different subtypes, click here.
Hypermobility Spectrum Disorder (HSD)
According to The Ehlers-Danlos Society, HSD is a disorder that’s diagnosed when there are musculoskeletal issues with joint hypermobility and joint instability, such as joint point and ease of dislocations, that can’t be explained by EDS or other heritable connective tissue disorders. The hypermobility found in HSD can be the result of injury or age and can be generalised or localised to one or a number of joints.
Health Consequences Of Ehlers-Danlos Syndromes (EDS)
The most common issues among those with EDS are chronic pain, fatigue, and physical disability Castori (2016), hence me writing about it as another invisible disability, thanks to that chance encounter on Twitter.
As stated, one of the key quality of life related-health issues of EDS is chronic fatigue, which can present a problem, as people who might actually have EDS can be diagnosed with chronic fatigue syndrome (formally known as myalgic encephalomyelitis, or ME, when I was a kid) instead, due to having overlapping symptoms (Hakim, De Wandele, O’Callaghan, Pocinki, and Rowe, 2017). Being given the wrong diagnosis is a problem because it means the person with EDS isn’t getting the treatment tailored to their disorder.
Chronic feelings of pain and fatigue are the two symptoms most closely linked to EDS being a disability as they both diminish the quality of life of the sufferer (Chopra, 2017). Our quality of life is where we get our sense of wellbeing and life happiness from, so to have two symptoms that drain your quality of life is significant.
Furthermore, EDS can come with additional risks during childbearing and pregnancy (Pezaro, Pearce, and Reinhold, 2018). According to The Ehlers-Danlos Support UK, due to the hormonal changes taking place in pregnancy, those with EDS can experience an increase and severity of symptoms. Furthermore, there can be issues specific to pregnancy and birth that can add extra complications. For example, people with EDS have issues with collagen, which can cause blood vessels to stretch and bulge, leading to a greater incidence of varicosities. They’re also at more risk of bleeding after birth.
For more information on EDS and pregnancy, please click here.
Conditions that cause chronic pain can come with mental health issues and an increased risk of substance dependency (Bulbena et al., 2017) as a result of ineffective pain management. Also, if you’re spending years trying to convince doctors of your health issues and you’re not being believed and your concerns being dismissed (The Ehlers-Danlos Society), that chips away at your mental wellbeing.
Although I don’t have EDS, I can’t count how many times I was afraid I was being a bother and a hypochondriac until someone finally believed me about my health problems. As a result, I now have a diagnosis for two invisible disabilities, with more potentially to come.
According to Bulbena et al., (2017), people with EDS, more specifically for their work, hEDS, came with negative feelings, poor emotion regulation, and anxiety. When 90% of people with EDS report chronic pain, it’s no wonder they may have negative feels about their situation, as chronic pain can affect your daily life, sleep quality, and put you off socialising (Chopra, 2017).
A Personally Experience
Today won’t be about me sharing my personal experience for a change, but that of @LagerdahlPhoto instead, who has graciously allowed me to share their story of having EDS with you, my
Unwanted Life readers.
This is a mouthful I know, but it lays close to my heart. I rarely speak about highly private things but I wanted to share my #MyEDSChallenge story. EDS isn’t one single disease but rather a group of connective tissue disorders that are inherited. Each person is affected differently depending on the version and even if you share the same version, they aren’t always the same.
Common problems are hypermobility in joints (they like to dislocate, for example!), chronic pain, fragile tissue and much more, but many of us struggle on a day-to-day basis with chronic pains and a weakened immune system. This is my case as well.
I rarely speak of it out of the fear of being seen as my illness rather than who I am as a person, but I can’t forgo mentioning it in an important month such as this. I spend most of my days bouncing between the management of my illness and art because, for many of us, art is the escape we need, but also the outlet we desire.
For more personal stories, please check out The Ehlers-Danlos Support UK personal story’s page by clicking here.
How Can You Help?
Every May, the people at The Ehlers-Danlos Society as well as people from all over the world show their support for people living with and affected by the Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorder (HSD). Thus, you can help by sharing their stories and talking about EDS and HSD every May.
Currently, The Ehlers-Danlos Society is running an Acts of Awareness Challenge, where you can earn points that can be exchanged for goodies. Thus, you can turn social media posts on Ehler-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month into prizes such as an eVoucher for Redbubble, a collapsible water bottle, a society pin, and more. If you want to find out more, then click here.
As always, leave your feedback in the comments section below. Also, feel free to share your experiences with Ehler-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the comments section below as well. Don’t forget to bookmark my site and if you want to stay up-to-date with my blog, then sign up for my newsletter below. Alternatively, get push notifications for new articles by clicking the red bell icon in the bottom right corner.
Lastly, if you’d like to support my blog, then you can make a donation of any size below as well. Until next time,
Unwanted Life readers.
Bulbena, A., Baeza‐Velasco, C., Bulbena‐Cabré, A., Pailhez, G., Critchley, H., Chopra, P., Mallorquí‐Bagué, N., Frank, C., & Porges, S. (2017). Psychiatric and psychological aspects in the Ehlers–Danlos syndromes. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 237-245. Retrieved from https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajmg.c.31544.
Castori, M. (2016). Pain in Ehlers-Danlos syndromes: manifestations, therapeutic strategies and future perspectives. Expert Opinion on Orphan Drugs, 4(11), 1145-1158. Retrieved from https://doi.org/10.1080/21678707.2016.1238302 and https://www.ehlers-danlos.com/wp-content/uploads/EOOD-2016.pdf.
Chopra, P., Tinkle, B., Hamonet, C., Brock, I., Gompel, A., Bulbena, A., & Francomano, C. (2017). Pain management in the Ehlers–Danlos syndromes. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 212-219). Retrieved from https://doi.org/10.1002/ajmg.c.31554 and https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31554.
Hakim, A., De Wandele, I., O’Callaghan, C., Pocinki, A., & Rowe, P. (2017). Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175 (1), 175-180. Retrieved from https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/ajmg.c.31542 and https://doi.org/10.1002/ajmg.c.31542.
Karthikeyan, A., & Venkat-Raman, N. (2018). Hypermobile Ehlers-Danlos syndrome and pregnancy. Obstetric Medicine, 11(3), 104–109. Retrieved from https://doi.org/10.1177/1753495X18754577 and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6134354.
Malfait, F., Francomano, C., Byers, P., Belmont, J., Berglund, B., Black, J., Bloom, L., Bowen, J. M, Brady, A. F., Burrows, N. P., Castori, M., Cohen, H., Colombi, M., Demirdas, S., De Backer, J., De Paepe, A., Fournel‐Gigleux, S., Frank, M., Ghali, N., Giunta, C., Grahame, R., Hakim, A., Jeunemaitre, X., Johnson, D., Juul‐Kristensen, B., Kapferer‐Seebacher, I., Kazkaz, H., Kosho, T., Lavallee, M. E., Levy, H., Mendoza‐Londono, R., Pepin, M., Pope, F. M., Reinstein, E., Robert, L., Rohrbach, M., Sanders, L., Sobey, G. J., Van Damme, T., Vandersteen, A., van Mourik, C., Voermans, N., Wheeldon, N., Zschocke, J., & Tinkle, B. (2017). The 2017 international classification of the Ehlers–Danlos syndromes. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 8-26. Retrieved from https://doi.org/10.1002/ajmg.c.31552 and https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajmg.c.31552.
Pezaro, S., Pearce, G., & Reinhold, E. (2018). Hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond. British Journal of Midwifery, 26(4), 217-223. Retrieved from https://www.magonlinelibrary.com/doi/pdf/10.12968/bjom.2018.26.4.217.
The Ehlers-Danlos Support UK – 0800 907 8518 – 09:00-17:00 Monday-Friday, email: firstname.lastname@example.org
50 thoughts on “EDS And HSD: Why Awareness Is Important”
This was a very interesting read! I never heard of EDS and HSD, so I am very glad to learn more about it. I am always baffled vy the waiting time to get diagnosed, i can only imagine how frustrating it must be. Thank you for sharing x
It’s a shame that some conditions can take a really long time to be diagnosed
Thanks for sharing this! My niece is currently going through the diagnosis process of EDS & hyper mobility, but like you say it’s a loooong process! It seems to be something which just isn’t taken seriously unfortunately.
I hope your niece is able to get there diagnosis quickly so they can start the correct management plan
A very interesting….yet also worrying read. My daughter was referred to be investigated for hyper mobility last year, since when we have heard absolutely nothing, other than everything’s taking longer because of Covid.
Hopefully one of the organisations I mentioned in this article will have advance about asking the rights questions and how to handle doctors to speed up the diagnosis process
I have to admit, I know very little if anything at all about EDS and HSD so this was a really interesting and helpful post. Your blog teaches me something new every single time I read a new post.
Thank you, I’m glad I was able to educate you about these conditions, I learnt a lot myself just researching and writing it
Rare and/or invisible illnesses can be so scary. Especially when it takes forever to get diagnosed, or when doctors assume you’re faking symptoms to get medication or attention. My heart goes out to everyone struggling to be seen, or to get proper care.
Having an invisible disability, much like having a mental illness, can make you feel like you’re faking it when no one believes you, that’s for sure. That doubt is never good
Thank you for raising awareness! I had no idea about these disorders but I will be keeping an eye out from now on.
It’s always good to be aware of conditions that are surprisingly common, just unknown
Such a great post to bring awareness to both EDS and HSD. It’s sad that it takes so long to be diagnosed. There are too many suffering with a variety of chronic illnesses and sometimes not taken seriously.
You contacting EDS to help them spread the word, such a selfless act. I will admit, sometimes I read your post and feel as if I lead a somewhat sheltered life. There’s lots to learn via your post. Keep sharing and raising awareness! Ah and that cover image – stunning!
The only thing I regret about writing this article was not being able to find photos I could use that showed real people with the conditions
I have to admit that a know very little about this diseases. Your blog always teach me something new an relevant
Thanks for sharing
I’m glad I was able to teach you about something new and spread awareness about the conditions
I must admit that I hadn’t heard of either EDS or HSD before reading this post – so thanks for helping to spread the word. I can’t believe how long it can take to receive a correct diagnosis – it must be terrible for those who are effectively just left in limbo.
In an ideal world with first class healthcare for everyone, no one would have to wait long for a diagnosis. Hopefully that day will come one day
Thank you for spreading awareness of this! I suffer from hypermobility but I hadn’t heard of EDS so this was a really interesting read. I was extremely lucky with my diagnosis – I didn’t know how long it can take some people to get one and that must be incredibly frustrating.
I hope you’ve got an effective management plan in place for your hypermobility
Thank you! Things have definitely calmed down a lot since covid but hopefully soon things will get better for everyone!
Yeah, covid19 really created a backlog when it came to treating other conditions
It takes that long to diagnose wow!
This is so important, 2 of my friends have EDS, so I’m all about more awareness!
I hope your friends are getting the support they need
I personally have not heard of these illnesses. Thank you for being awareness to this issue. I hope scientists and doctors can learn more of ways to treat. I can’t believe it can take up to 10 years to be seen.
That’s the problem with disorders you can’t see, they can take a while to figure out
This is super helpful, what a wonderful thing to encourage awareness of. I have a friend that suffers so I’ve learnt more today so thank you 🙂
Happy to have been able to do that
Thank you for this very educational blog post. I have not heard of the disease before. I hope your awareness post can help more people suffering from the illness
I hope so
The invisible disabilities and chronic conditions are the ones that, unless people share or know about them, cannot find much support in. It is especially tough when one’s condition is something not immediately identifiable by a physician. I have never heard of either EDS or HSD, but I love that you wrote this as a way to share your newly-acquired knowledge about something you just learned about in a timely and informative fashion! <3
Thank you for sharing your thoughts ?
I’ve honestly never heard of these before, it’s so important to create and share awareness of them to educate people!
These syndromes sound horrific. Maybe EDS can be treated with CRISPR at some future point. I hope your post will raise awareness.
That would be great if it could
Man, the years of un/misdiagnosis must be so frustrating! Thank you for sharing the information about HSD and EDS. These are new to me, and it sounds like there needs to be A LOT more awareness about them. Kudos for getting it out there!
The more awareness the better, that’s for sure
You’ve done an amazing job of raising awareness! I myself have Ehlers Danlos Syndrome and other conditions because of it. I went 5 years before I finally got a diagnosis and it was such a relief to know why my body was falling to pieces. Thank you for sharing this and making EDS known to the world Xo
Elle – ellegracedeveson.com
Thank you, that’s means a lot ☺️ and thanks you for sharing your experience. I hope you’re now getting treatment that’s improved your quality of life since being diagnosed
I already know a little about these conditions but it’s so important to raise awareness for them- especially because there is so little research and proper doctors to deal with diagnoses, treatment, or support- it’s ridiculous! Thank you for sharing your thoughts 🙂
Thanks for reading and for commenting
Your post is so well researched. So many illnesses are connected or interdependent but Drs insist on treating them separately, or ignore symptoms, because they know best.
Thank you. To be fair to doctors, there are a lot of medical conditions out there with a lot of overlapping symptoms with diagnostic methods that relies on educated guess work
Goodness me, I had no idea that it can take 10 plus years to obtain a diagnosis! Awareness is so so important!
It’s a depressingly long time isn’t it