May is Ehlers-Danlos Syndrome Awareness Month
EDS stands for Ehlers-Danlos Syndrome, which is one of many hypermobility spectrum disorders. There are 13 different types of EDS.
Most cases of EDS are rare, some of the more common types are hyper-mobile (hEDS), classic (cEDS), vascular (vEDS), and Kyphoscoliotic (kEDS).
People with hEDS may experience:
- joint hyper-mobility
- loose, unstable joints that dislocate easily
- joint pain and clicking joints
- extreme tiredness (fatigue)
- skin that bruises easily
- digestive problems, such as heartburn and constipation
- dizziness and an increased heart rate after standing up
- problems with internal organs, such as mitral valve prolapse or organ prolapse
- problems with bladder control (stress incontinence)
Prevalence in the neurodivergent population
The prevalence rates of EDS in Autistics and people with ADHD are not well known.
In a 2021 study of 200 children with hEDS:
The prevalence rate of ADHD in this group was 16%, and another 7% were in the process of seeking or completing assessments for ADHD. The prevalence rate in the general population is estimated to be about 5%.
6% of the children in this study had previously been identified as Autistic, compared to an estimated prevalence rate of 2% in the general population.
A smaller study in 2020 looked at the rates of joint hypermobility in adults with autism, ADHD, and Tourette syndrome. This study found that 50% of their 100 participants had some form of generalized joint laxity, meaning their joints were hypermobile.
These participants were not evaluated for EDS or any further diagnoses, the researchers were exploring the links between neurodevelopmental conditions and joint hypermobility.
I do not have EDS, but I most certainly have joint hypermobility. I have played soccer for much of my life, and have rolled my ankles more times than I can count.
I remember going to physiotherapy and other medical appointments and having therapists comment on how “wobbly” my joints are, making it unsurprising that I roll my ankles so easily.
My love of sports has probably helped mitigate some of the symptoms, but only because they were mild enough to play through in the first place.
There are many others who experience more severe symptoms, such as those associated with Vascular EDS. vEDS can cause fragile blood vessels that tear, resulting in serious internal bleeding, risk of organ problems, and even partial collapse of the lung.
Rare does not mean non-existent
Many people who experience chronic pain or other unexplained symptoms have their suffering minimized or dismissed by medical professionals and other people in their lives.
This is especially true for neurodivergent people, whose sensory experiences can be significantly different from that of neurotypicals.
It is also common for people of marginalized genders (cis-women, trans, non-binary, etc.) to be taken less seriously by professionals, and as a result, are less likely to receive an accurate diagnosis and treatment.
This is why the Ehlers-Danlos Society uses a Zebra as part of its logo, website design, and educational materials. Medical students are taught to think of horses instead of zebras when they hear hoofbeats.
The expression refers to an old adage, “common things are common”. As such, medical students are encouraged to first rule out the most common causes of their patients’ complaints before exploring less likely options.
That makes logical sense, but what about the Zebras who are suffering and being told their pain must be anxiety, psychological, due to mental illness? A rare condition is still an existing condition, so somebody has to have it.
A Dazzle of Zebras
I was misdiagnosed with Borderline Personality Disorder (BPD) in my twenties, and from that day until I received my accurate diagnosis, medical professionals viewed any of my symptoms through that lens. Their first assumption was that I must be anxious or “attention seeking”.
I am one of the lucky ones. After almost 20 years of carrying around the baggage associated with an incorrect diagnosis, I was finally vindicated. Many others aren’t (yet) so fortunate.
That is why we must improve physician training and public awareness about Autism, ADHD, EDS, and other “rare” conditions that usually end up being less rare than originally assumed.
Sometimes when you hear hoofbeats, it really is a zebra.
© Jillian Enright, Neurodiversity MB
Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of Personalized Medicine, 10(4), 260. http://dx.doi.org/10.3390/jpm10040260
Csecs, J. L., lodice, V., Rae, C.L., Brooke, A., Simmons, R., Dowell, N. G., Prowse, F., Themelis, K., Critchley, H. D., Eccles, J. A. (2020). Increased rate of joint hypermobility in autism and related neurodevelopmental conditions is linked to dysautonomia and pain. BMJ Yale. https://doi.org/10.1101/2020.09.14.20194118
Kindgren, E., Quiñones Perez, A., Knez, R. (2021). Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatric Disease and Treatment, 17, 379–388. https://doi.org/10.2147/NDT.S290494