Hypermobility & Ehlers Danlos & How They Affect Toileting

What are Ehlers Danlos & Hypermobility Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the body’s ability to produce or process collagen, a protein essential for skin, joints and blood vessels. People with EDS often experience hypermobility (excessive joint flexibility), fragile or stretchy skin, and a tendency for easy bruising or slow wound healing.

Hypermobility can also occur independently, known as Hypermobility Spectrum Disorder (HSD). While being flexible isn’t inherently bad, extreme hypermobility can lead to joint pain, instability and a higher risk of injury. 

Ehlers Danlos Support UK defines connective tissue…

‘As tissue that lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks.’

How Common are They?

The prevalence (or frequency) of Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) varies depending on the type and diagnostic criteria:

Ehlers-Danlos Syndrome (EDS)

• Classical EDS (cEDS): Estimated to affect 1 in 20,000–40,000 people. (Malfait et al., 2017)
• Hypermobile EDS (hEDS): Prevalence is unclear as it appears to be underdiagnosed. Some estimates suggest it could affect 1 in 500–5,000 people. (Castori et al., 2014)
• Other rare types (vascular, kyphoscoliotic, etc.): These subtypes are much rarer, often affecting fewer than 1 in 100,000 individuals. (Byers, P. H., & Murray, M. L., 2012)

Hypermobility Spectrum Disorders (HSD)

• Generalized joint hypermobility is relatively common, affecting 10–20% of the population (Remvig et al., 2007)
• However, HSD involves hypermobility with symptoms like pain or instability, which makes it less common than generalized hypermobility alone.

The evidence suggests that a significant number of people are either diagnosed with Ehlers-Danlos syndrome (EDS) or hypermobility or are actively questioning whether they might have these conditions. This aligns with my professional experience, where a large percentage of the individuals I work with report these traits, leading me to believe that the actual prevalence rates may be higher than currently recognised.

How Does this Connect to Toileting?

Since connective tissues are throughout our bodies, people with EDS or HSD have a broad range of symptoms. This includes impacting toileting due to their effects on the body’s structures and function. Structures impacted can include the digestive tract, bladder and colon and therefore affect excretion (elimination) and toileting.

Sluggish colon: this refers to when the colon’s (longest part of the large intestine) muscle contractions are slow and therefore stool moves through the colon too slowly, resulting in too much water being absorbed

Rectal prolapse: this is when your rectum, part of your large intestine, slips down inside your anus. It’s often caused by a weakening of the muscles that hold it in place.

Anal fissure: is a tear or open sore (ulcer) that develops in the lining of the large intestine, near the anus, often caused by constipation and straining or passing hard or large stools during a bowel movement

What can we do to help?

First, know that accidents and having trouble accessing a bathroom (anxiety, fear of pain, not recognising needing to go until too late) indicate that someone needs support & not to frame this as a purely behavioural issue.

Understanding the interplay between connective tissue differences and toileting can guide more effective management strategies, such as pelvic floor therapy, adaptive equipment, or individualized bowel and bladder programs.

• Support ongoing & frequent visits to the bathroom if needed
• Support longer lengths of time on the toilet if needed (bring in distractions too)
• Learn signs of infection & access your doctor for treatment when/if needed
• Depending on situation, some people benefit from increasing fluids or diet changes
• Assess education about interoception (signals from inside the body) to support recognising signs of needing to toilet
• Movement to increase pelvic floor strength & motility (movement of food from the mouth & all the way out through the colon)

What About Support in the School Setting?

Jane Green of SEDS Connective has created a free Schools Toolkit and includes reasonable adjustments for students in the school setting. One key fact that is highlighted for school staff is that

‘Pupils with JHS (joint hypermobility syndrome) or EDS may need to use the toilet more often than others and may need more time in the toilet’

Some suggestions include that students be supported to use the disabled toilet with guard rails, leave to use the toilet during lessons and having a prompt card to use as communication with teachers.

Thank you for learning about the community

Laura Hellfeld

RN, MSN, PHN, CNL

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References

1. Malfait et al. (2017). The 2017 international classification of the Ehlers Danlos syndromes. Am J Med Genet C Semin Med Genet, 175(1), 8-26. doi: 10.1002/ajmg.c.31552.
2. Castori et al. (2014). Nosology and inheritance pattern(s) of joint hypermobility syndrome and Ehlers-Danlos syndrome, hypermobility type: a study of intrafamilial interfamilial variability in 23 Italian pedigrees. Am J Med Genet A, 164A(12), 3010-3020. doi: 10.1002/ajmg.a.36805.
3. Byers & Murray (2012). Heritable collagen disorders: the paradigm of the Ehlers-Danlos syndrome. Journal of Investigative Dermatology, 132, E6-E11. https://doi.org/10.1038/skinbio.2012.3
4. Remvig et al., (2007). Epidemiology of general joint hypermobility and basis for the proposed criteria for benign joint hypermobility syndrome: review of the literature. The Journal of Rheumatology, 34(4), 804-809.