Ehlers-Danlos Syndrome Awareness in the Month of May

Ehlers-Danlos Syndrome Awareness

There are many members and supporters of FibroFlutters who have Ehlers-Danlos Syndrome (EDS), or Hypermobility Spectrum Disorders (HSDs). Including myself and fellow co-founder Vicky Green who has been officially diagnosed with Hypermobility Type EDS (hEDS). Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders is part of our advocacy.

In our earlier days as a community support group our knowledge of this rare genetic condition was very limited. Over time as our understanding of it grew so did our advocacy efforts as a patient group.

We are supporters of EDS Support UK and ask you to please join us to help them raise awareness.

You can do this during our May-long awareness campaigning, and via the many fundraising efforts that are happening within the UK. We do ask though that awareness campaigning can occur all year long. It is not restricted to the month of May which is a recognised global date for EDS.

Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.

You can check if there is a group near you via this link: Support Groups

There are also other differing levels of paid membership that you can check out via this link: Membership Levels

Huge thank you to everyone that shows us their support it is truly appreciated.

COVID-19

Please keep safe, remember to socially distance yourself even with a lessening of the lockdown we should be still keep prevention at the forefront of our minds. Remember to wash your hands often for 20 seconds and to wear a mask if you are going out and about.

Wishing you all wellness and less pain

Carole and the team

#showyourstripes #shareyourrare #strutyourstripes

Includes other places around the #globe for #ehlersdanlossyndrome #hypermobilityspectrumdisorders #healthinformation and #resources