Hypermobility & Ehlers Danlos & How They Affect Food & Eating
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.
Image from Canva, by by Anneleven
You may also be interested in my blogs 'Hypermobility & Ehlers Danlos & How They Affect Toileting' or ‘Understanding Food Choices Beyond 'Picky Eating': Medical Conditions and Their Impact on Eating Habits’
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 These?
There is research (linked in reference section) looking at numbers and both seem quite frequently experienced in the Autistic and neurodivergent communities. 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 affect food and eating choices?
Since connective tissues are found throughout the body, people with hypermobility or Ehlers-Danlos Syndromes (EDS) may experience a broad range of symptoms that affect how, what and when they eat.
“If you can’t connect the issues, think connective tissues”
Seen in many places, including SEDS Connective
We might observe someone managing their pain, fatigue, or digestive symptoms through their food and eating habits. This could include changes in how they eat, what they eat, or how much they can tolerate at a time. Common experiences include:
Postural muscle fatigue when sitting upright, especially for long meals
Muscle fatigue when feeding yourself, especially upper limbs, hands, wrists
Difficulty with cutlery, especially for foods requiring strength or coordination
Fatigue with chewing, particularly tougher foods
Slow eating or needing longer mealtimes
Quick satiety (feeling full quickly)
Abdominal pain or cramping
Bloating and distension
Heart burn or acid reflux
Constipation or diarrhoea, often fluctuating
Nausea and/or vomiting
Dysphagia (difficulty swallowing)
In addition to these physical symptoms, several related factors can also influence eating patterns:
Sensory sensitivities: Some people with hypermobility or EDS also experience sensory processing differences, which may impact what textures, temperatures, tastes and smells of food that they can manage.
Example: Avoiding crunchy or stringy foods due to discomfort or fatigue when chewing.
Autonomic dysfunction (e.g., POTS): Conditions like Postural Orthostatic Tachycardia Syndrome are common alongside hypermobility. It can affect appetite, cause nausea and light-headedness, or make eating large meals difficult due to blood pooling or rapid heart rate after meals. This makes large meals or upright eating (ie. like sitting on a chair at the table) difficult. To learn about more supports, you can visit POTS UK.
Malabsorption or nutritional challenges: Some people may find it hard to meet nutritional needs due to differences in absorption, gastrointestinal dysmotility (food and waste doesn’t move in the intestinal tract as effectively) or needing to eat less volume or less variety of foods. This can lead to the need for making dietary adjustments, supplements, or even enteral feeding in some cases.
Food-related anxiety or eating distress: Repeated experiences of pain, nausea, or unpredictable bowel issues can lead to anxiety around eating or avoidance of food.
Conclusion
Living with hypermobility or Ehlers-Danlos can make something as everyday as eating feel exhausting or unpredictable, but you’re not imagining it. These challenges are real, and you’re not alone. Whether it’s adapting meals, pacing yourself, or seeking professional support, there are ways to make eating feel safer and more manageable.
To learn more, there are some great charities listed in the Resources list.
Thank you for learning about the community,
Laura Hellfeld
RN, MSN, PHN, CNL
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References and Resources
Hypermobility & Ehlers Danlos & How They Affect Toileting, Blog
Gabby’s Glimmers: An Affirming Story of an Autistic Child and their Favourite Food
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.
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.
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
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.