Daisy, Young Healthwatch volunteer, writes the third blog about the rare disease, Ehlers-Danlos Syndrome

Hypermobile Ehlers-Danlos Syndrome

Hello! This is the 3rd blog in the Ehlers-Danlos syndrome series. As I said in the last blog, this one is about Hypermobile Ehlers-Danlos Syndrome.

I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS) last August. hEDS is the most common form of Ehlers-Danlos Syndrome, though it is still difficult to be diagnosed with.

Hypermobile Ehlers-Danlos SyndromeThe diagnostic criteria for hEDS are very strict, and if you do not meet it, you may have another condition such as Hypermobility Spectrum Disorder. It is important to acknowledge that treatment and care are still important for both conditions, and not having EDS does not mean you are less deserving of care.

The criteria can be seen here: https://www.ehlers-danlos.com/heds-diagnostic-checklist/

Some of the common signs symptoms of hEDS are:

  • Joint hypermobility
  • Loose unstable joint that dislocate or sublux easily
  • Soft velvety skin
  • Dental crowding and high or narrow palate
  • Stretchy skin
  • Long arms in relation to height

Next time, I will speak about Vascular Ehlers-Danlos Syndrome, which is considered the most severe form of EDS.

If you are interested about this condition, you can find out more information on this website: https://www.ehlers-danlos.org/what-is-eds/