“Often, people don’t understand how someone can have so many health issues in different parts of the body. But the connective tissues are associated with every organ, which is why many patients have multi-systemic problems.”
Daily Telegraph
Extracts
Kiley, now 62, is one of an estimated one in four people with joint hypermobility, a condition involving the body’s connective tissues, or collagen. This is stretchier than usual, causing their joints to have a greater range of motion than is expected or normal.
For the majority of those with the condition, there are no symptoms beyond an unusual suppleness, often in only one area of the body. For many others, however, it can cause a wide range of debilitating problems including pain and stiffness of joints because the muscles around the joints have to work much harder to provide stability, and arthritis because of the wear and tear caused by abnormal movement.
Recent research has linked hypermobility with chronic inflammation and an increased risk of conditions including long Covid, postural orthostatic tachycardia syndrome (POTS) and myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). With Covid, it is thought the virus which causes the infection attacks collagen, and in people who already have looser collagen than usual – even if they don’t know it – it can result in long-term illness. Hypermobility is also linked to autism and ADHD.
Until recently, it was little known about and because there is currently no genetic test available, it is often still misdiagnosed. “Sadly, I see so many people who have been treated badly by medical professionals who don’t take it seriously, particularly in women,” says Dr Stephanie Barrett, a rheumatologist specialising in hypermobility spectrum disorders and the founder of The BrainWave Clinic.
Most people who experience health repercussions from their double-jointedness – around 3 to 4 per cent of the population – suffer from joint hypermobility disorder. A smaller group suffer from the more extreme Ehlers-Danlos Syndrome, a genetic condition of which hypermobility is a symptom. “Most people with EDS often have a more severe musculoskeletal presentation, severe joint dislocation and prolapses,” says Dr Barrett.
“The other end of the spectrum, hypermobility spectrum disorder, or HSD, tends to be less well understood, but it is part of the same disease. The same collagen defect is present in both, and because that collagen is in every ligament of the body, it can cause serious internal organ issues in both cases.”
Mor Information
- Medical Matters: Hypermobility & Ehlers Danlos Syndrome | Spring 2023
- NHS: Ehlers-Danlos syndromes | 04/10/2022
- Ehlers-Danlos Support UK