Rare Types of EDS
There are 13 types of EDS. Although hEDS (hypermobile Ehlers-Danlos Syndrome) is the most common and usually what we talk about, we can’t leave our rare and ultra rare friends behind!
Facts about Vascular type (vEDS)
Affects 1 in 100,000-200,000 people
Often involves generalized joint hypermobility but characterized by weak blood vessels and can be life threatening
Found with a genetic test and clinical criteria
Likely to have a major cardiac event (arterial dissection or rupture, organ rupture, or aneurysms)
Should only do low to moderate intensity exercises
A close family member would likely have had a major cardiac event by age 50 if this runs in your family. A diagnosis can be really important for this variation and should be monitored closely by your healthcare provider
Just because you have some dysautonomia or other vascular involvement does not mean you have vEDS. Most seek diagnosis because of family history of serious cardiac event before age 50. Talk to your doc if you’re concerned about this type.
Creators with vEDS:
@the.dani.adventure
@thatdyingguy
Facts about Classical type (cEDS)
Affects 1 in 20,000-40,000 people
Diagnosed by genetic testing or skin biopsy under a microscope
Often involves extra fragile and extra stretchy skin alongside joint dislocations/subluxations, easy bruising, and generalized joint hypermobility
May show premature aging in skin
This type is often diagnosed in childhood due to significant skin injuries/tearing, bruising, and family history
Protecting skin is important and learning to modify activities to stay active and healthy while managing injury risk
Creators with cEDS:
@abbeyphillipson
Keep in mind, there may be overlap in different types between different people. Just because you have a few things that are similar does not mean you have that type. Genetic testing is important if anything other than hEDS/HSD is suspected. Family history usually guides this testing.
Happy EDS awareness month!
Additional Reading
New on YouTube
“Wait…am I hypermobile?” Series is now live on YouTube! With new videos being added throughout the month, we’ll go over some things you may not have thought were related to hypermobility, and how to manage them!
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This blog is written based on personal experience and is not medical advice. Always ask your doctor for individual concerns and support.