Daisy, Young Healthwatch volunteer, writes the first in a series of blogs about the rare disease, Ehlers-Danlos Syndrome

My name is Daisy, I live in Central Bedfordshire and I have a rare disease.  It’s called Ehlers-Danlos Syndrome (pronounced Ay-Lers Dan-loss syndrome).  

I am 19 but was only diagnosed with it in August 2020, even though I have had it since birth. One in 5000 people worldwide have EDS but unfortunately many people do not get diagnosed until their 40s or 50s!  

I will be writing a blog series, speaking to as many people as I can about Ehlers-Danlos Syndrome, in the hope to raise awareness about the condition.  

What is Ehlers-Danlos Syndrome? 

There are 13 types of Ehlers-Danlos Syndrome (EDS) types. Each present very differently but often have overlapping symptoms.  All EDS types are genetic, though Hypermobile Ehlers-Danlos Syndrome has no identified gene as of yet. 

Types: 

  1. Classical Ehlers-Danlos Syndrome (cEDS) 
  2. Classical-like Ehlers-Danlos Syndrome (clEDS) 
  3. Cardiac-valvular EDS (cvEDS) 
  4. Vascular EDS (vEDS) 
  5. Hypermobile EDS (hEDS) – this is the type I have! 
  6. Arthrochalasia EDS (aEDS) 
  7. Dermatosparaxis EDS (dEDS) 
  8. Hyphoscoliotic EDS (kEDS) 
  9. Brittle Cornea Syndrome (BCS) 
  10. Spondylodysplastic EDS (spEDS) 
  11. Musculocontractural EDS (mcEDS) 
  12. Myopathic EDS (mEDS) 
  13. Periodontal EDS (pEDS) 

As a closing point for this introductiondo speak to people with rare diseases as we want to spread awareness.  Sif you have any questions do not be afraid to ask them but please be nice in the way you word it; they will be happy to answer you!  

In the next blog, I will be talking about symptoms of Ehlers-Danlos Syndromes and my experience of getting diagnosed.