Daisy, Young Healthwatch volunteer, writes the fourth blog in the series about the rare disease, Ehlers-Danlos Syndrome

Vascular Ehlers-Danlos Syndrome

Hi everyone, I hope you are doing well. This is the 4th blog in the Ehlers-Danlos syndrome series. This blog is about Vascular Ehlers-Danlos Syndrome (vEDS), which is considered one of the most severe forms of EDS. I do not know anyone with vEDS, but there are charities that support people with this condition, such as “Annabelle’s challenge”, you can find out more about the work they do on their website.

Vascular Ehlers-Danlos Syndrome is estimated to affect 1 in 100,000 people!

Vascular EDS

Although vEDS does come under the EDS umbrella, the symptoms can be quite different, due to the way it affects the cardiovascular system.

Some of the symptoms that are different to other forms of Ehlers-Danlos Syndrome are:

  • Bruising easily (this is usually due to fragile blood vessels)
  • Thin skin – you can often see blood vessels on the upper chest and legs
  • Organ rupture
  • Complications with fragile blood vessels – for example having ruptures, dissections or aneurysms

It is important to note that individuals with vEDS can have overlapping symptoms with the other types of Ehlers-Danlos syndrome, for example they may be hypermobile.

Similar to Classical Ehlers-Danlos Syndrome, there are similarities between facial features for those with vEDS. People with vEDS may have fine hair, thin nose and lips, large eyes and small earlobes.

It is really important to see a specialist if you think you may have this condition, I recommend you speaking to your GP too.

In the next blog I will be talking about my experience of getting diagnosed with Ehlers-Danlos Syndrome.