It's that time of year again! EDS & HSD awareness month comes around quick! I'm back for my 5th annual series of Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder Awareness Month videos with my dazzle of zebras from across the world. This year we have 27 zebras with 4 different types of EDS and HSD from 8 different countries sharing their experiences of what it's like to live with these rarely understood conditions on a daily basis.
In this video we are sharing our journey to diagnosis. EDS is a genetic condition so it is something you are born with but the average age for symptoms to really start becoming a problem is 12 but the average age for diagnosis is 24. It takes on average between 10 and 12 years for people to get a diagnosis and it is so tough to live through those years with no answers and no management options often being disbelieved, misunderstood and misdiagnosed along the way. Please help us raise awareness this month so that this time can be reduced. Please share.
If you think you or someone you know may be living with hypermobility spectrum disorder or ehlers danlos syndromes please look into the Ehlers Danlos Society's 2017 criteria.
You can find support for getting diagnosed and living with these conditions below and you can also donate so these charities can help support more people:
www.ehlers-danlos.com
https://www.ehlers-danlos.org/
https://www.mindbodyeds.org.uk/
I am fundraising for @TheEhlersDanlosSociety throughout May please head to / chronicallyjenni to donate
If you liked this video please subscribe to my channel :)
You can also find me on other social media:
Instagram: / chronicallyjenni
Facebook: / chronicallyjenni
Twitter: / chronicjenni
My Support Group: / 785786465114178
Email: [email protected]
Blog: https://www.chronicallyjenni.com
Amazon Store: https://www.amazon.co.uk/shop/chronic...
Huge Thanks to Everyone who was involved in this video:
Adriana, North California, USA,18, hEDS, IG: @adrianaedswarrior
Alexis, Alberta, Canada, 20 , hEDS, She/They, IG: @therarewanderer & @ggalexis12 Blog: https://therarewanderer.travel.blog/
Alyssa Maryland, USA, hEDS, IG: @spoonfullygraceful
Amber, Gloucester, UK, 18, HSD, They/Them, IG: @_prisma_art_
Amy Mckee, Yorkshire, UK, 22, HSD, She/her, IG: @voldycat7 YT: / @voldycat
Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: @Ayesha Sha Sha!
Bradley, Victoria, Australia, 29, vEDS, he/him, IG: @veds_zebra
Caroline, Essex, UK, 35, hEDS, IG: @lilcaz10
Catie, Pennsylvania, USA, 25, hEDS, She/her, IG: @lifeasazebra & @sunflower.catie
Clara, Texas, USA, 21, hEDS, IG: @clara_and_arlo
Eleanor, Scotland, 22, hEDS
Eliza, London, UK, 24, hEDS, They/them, IG: @disabled_eliza
Emma, Kent, UK, 27, hEDS, She/her, IG:@ehoughton24601
Georgia, Cardiff, 22, heds, she/her
Jasper, Newcastle, UK, 26, hEDS, He/him Twitter: @queercanthear
Jeannie Di Bon, London, UK, hEDS IG: @jeannie_di
Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni
Jenny, Hampshire. UK, 32, hEDS, IG: @jennycole1998 YT: @Jenny Cole Blog: http://jaffacat.co.uk/
Jill, The Netherlands, 27, hEDS IG: @jillhubersmooren
Kate, Northumberland, UK, 26, hEDS, IG: @katestanforth
Katya, London, UK, 26, hEDS, IG: @positivelychronictravels
Luca, Ferrara, Italy, 35, cEDS, he/him, IG: @tre8bre FB:@tre8bre.1985 YT: @tre8bre
Marisol, Mexico City, Mexico, 28, hEDS, She/her, IG:@solprni
Rachel, Essex, UK, 25, hEDS, IG: @racheleanneblog
Robin , Vancover, Canada, 29, hEDS, IG: @robinhahnsopran YT: / @robinhahnsopran
Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot
Special Thanks to my amazing boyfriend Ian for helping with editing!
You can support my content by:
Buying me a virtual Coffee at https://www.buymeacoffee.com/chronicj...
You can also get a membership for extra Chronically Jenni content
Taking a free trial of audible audiobookshttps://www.amazon.co.uk/Audible-Memb...
Heading to my Amazon Store & purchasing from my POTS & EDS survival kits -
https://www.amazon.co.uk/shop/chronic...
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