Vascular Ehlers Danlos syndrome (vEDS) or Hypermobility Syndrome, is a rare disorder, estimated to affect between 1 in 50,000 and 1 in 200,000 people.
Hypermobility Syndrome isn’t a common subject of discussion, so we thought we would introduce it to you with a Q&A style article. Marco sees most of our patients presenting with Hypermobility Syndrome and has answered a few questions below.
- What are the symptoms of joint hypermobility syndrome?
The signs and symptoms of JHS are variable. Most commonly the initial complaint is joint pain which can be generalised or symmetric.
- How is it identified and diagnosed?
Determining the Beighton score is essential for making a diagnosis. The first step is to calculate the Beighton score, which is a measure of generalised joint laxity. A Beighton score of 4 or more points is considered indicative of generalised joint laxity. This scale is useful to distinguish JHS from other connective tissue disorder.
- Do you see/treat many people with JHS?
Yes indeed. Honestly, you rarely see people seeking attention only because of JHS. They often come for another reason as they do not think you can help them to optimise or manage their condition. The truth is we can!
- What sort of problems do they present with?
Commonly they present with new onset of joint pain, ligament sprain or joint instability, dislocation. Symptom presentation often depends on their level of activity as well as age.
- What other signs/problems often co-occur alongside JHS?
Common symptoms are joint stiffness, myalgia, muscle cramps, swelling around the joints, generalised fatigue
- What treatment or advice do you give to people with JHS?
The first step in managing JHS is to emphasise to patients that this syndrome is a non-progressive, noninflammatory connective tissue disorder. Effective treatment needs to be tailored around monitored strengthening exercises, modification of activity of daily living, patient’s education and manual therapy.
- What should people with JHS do in regard to activity and exercise? Anything that’s particularly helpful or that they should avoid?
Often, vigorous and repetitive activities have been targeted as aggravating factors. Overtraining, poor pacing, too many performances or athletic competitions, and focusing on joint flexibility rather than stability may all increase joint pain and the risk of injury.
- What self-management techniques should people with JHS use?
I think it is important that patient have a clear understanding of their condition. They need to be educated to listen to their body. It is often helpful to include mindfulness to reduce level of stress as a self- coping Strategy.
- Anything else you’d like to add?
I just want to reassure all people affected by JHS, not to be scared of moving and engaging in things they like to do. Movement and exercise is the cure.