I cannot believe that EDS (Ehlers Danlos Syndrome) & HSD (Hypermobility Spectrum Disorder) awareness month has come round quite so quickly again! This is the beginning of my 4th annual set of EDS awareness month videos which bring together people from across the world with different types of EDS & HSD to raise awareness and tell you what it is like to live with these conditions on a daily basis. It would mean the world to us if you could share and help raise awareness this EDS awareness month 2020.
This week I'm talking to 2 very special zebras who both live with rare types of EDS. Sydney is from the USA and lives with Classical EDS which means her skin is extremely fragile and extremely stretchy. Many of the other traits if cEDS are similar to those experienced with the more common hypermobile type. Bradley is from Australia and has vascular ehlers danlos syndromes which affects 1 in 90,000 and is one of the most lifethreatening types of EDS.
If you found this video helpful or informative please consider donating to our fundraiser for the EDS society https://www.justgiving.com/fundraisin... . You can find more information about EDS & HSD by visiting ehlersdanlos.com
For support & information about Vascular EDS visit https://www.annabelleschallenge.org/
I'm Chronically Jenni & I was diagnosed with EDS, POTS & a CSF leak in 2016 and I make weekly vlogs about my life with chronic illness as well as content that helps other people living with these conditions and raises awareness.
You can also find me on other social media:
Facebook: / chronicallyjenni
Instagram: / chronicallyjenni
Twitter: / jennipettican
Facebook support group: / 785786465114178
Mixcloud: https://www.mixcloud.com/jennipettican/
Email: [email protected]
Patreon: / chronicallyjenni
Kit: https://www.kit.co/chronicallyjenni
Blog: https://www.chronicallyjenni.wordpres...
Music Credit: Youtube Audio Library
Meet this year's Dazzle:
Alexis, 19, Alberta, Canada. hEDS. Instagram @ggalexis12 or @therarewanderer
Amy, 24, Dunblane, Scotland. hEDS. Instagram @ymagunn
Becca, 36, Surprise, Arizona, USA. hEDS. Instagram @the_stoli_zebra Co founder of AZ Zebras (non profit support group in Arizona.)
Bradley, 28, Merrigum, Victoria, Australia. vEDS. Instagram @veds_zebra
Catalina, 21, Chile. hEDS. Instagram @_linacata_
Chloe, 29, Liverpool, UK. hEDS. Instagram @Chloeleanne123 Blog www.chloeschronicallycomediclife.com
Desiree, 27, New Jersey, USA. hEDS. Instagram @deschwartz16
Gemma, 23, Bedfordshire, UK. Instagram @gembaileysmith
Hailey, Ohio, USA. hEDS. Instagram @hailhailfail
Iga, 19, Poland. hEDS. Instagram @zebrasmatter Facebook Codzienność w paski
Izzy, 23, New York, USA. hEDS. Instagram @izzykornblau Youtube @Izzy Kornblau
Jayme, 29, Chicago, Illinois, USA. hEDS. Instagram @msjaymelee
Jeannie, London, UK. hEDS. Instagram @jeannie_di Youtube @Jeannie Di Bon
Jenni, 24, Essex, UK. hEDS. Instagram @chronicallyJenni Youtube @Chronically Jenni blog www.chronicallyjenni.com
Jess, Hertfordshire, UK. hEDS. Instagram @jessgibson678
Jelly, 16, Wisconsin, USA. waiting for genetic testing for cEDS vs hEDS. Instagram @jelly_is_still_sick
Kim, 31, Ireland. hEDS. Instagram @chronicallykim Facebook @ChroniclesofKim
Laura, 25, Sheffield, UK. hEDS. Instagram @LolaaMaple
Leslie, 23, Florida, USA. hEDS. Instagram @bellabunny1027
Maddie, 19, North Carolina, USA. hEDS. Instagram @maddies_recovery
Meg, 23, Norwich, UK. hEDS. Instagram @Megnnnrrr
Natasha, 19, Kentucky, USA. Snapchat adams_natasha17
Raquel, 25, Lisbon, Portugal. HSD. Instagram @wonderland.rc
Rebecca, 24, Hertfordshire, UK. hEDS. Instagram @beccaarlouise
Romane, 23, Switzerland. hEDS. Romane also has Autism and was uncomfortable speaking on camera so made signs and Jenni did a voiceover on her pieces. Instagram @roman.esque
Suzanne, 32, Aberdeen, Scotland. hEDS.
Taylor, 14, North Texas. HSD. Instagram @infinitlysunny
Sydney, 23, Ohio, USA. cEDS. Instagram @clinicallychronically