What is Ehlers Danlos Syndrome? || EDS & HSD Awareness Month 2022
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- Опубліковано 30 тра 2022
- it's that time of year again! EDS & HSD awareness month comes around quick! Unfortunately living with this condition has meant I'm getting this video out much later than planned but awareness should be all year round right? So I'm back for my 6th 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 zebras from different countries sharing their experiences of what it's like to live with these rarely understood conditions on a daily basis.
This is the first video in the 2022 series and we are talking about what EDS and HSD are and what is it really like to live with these conditions on a daily basis from symptoms which impact our bodies and the aspects with impact our whole lives.
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Huge Thanks to Everyone who was involved in this video:
Alexis, Alberta, Canada, 21 , hEDS, She/They, IG: @therarewanderer IG & TW: @ggalexis12 Blog: therarewanderer.travel.blog/
Amy, Yorkshire, UK, 23, hEDS, She/her, IG: @voldycat7 YT: / @voldycat
Audrey, Washington, USA, 22, IG: @chronically_revived
Bradley, Victoria, Australia, 30, vEDS, he/him, IG: @veds_zebra
Caroline, Essex, UK, 36, hEDS, she/her, IG: @lilcaz10
Charlotte, West Sussex, UK, 24, hEDS, she/her. IG: @charlotteamylouise
Eloise, Hampshire, UK, 23, hEDS, she/her, IG: @eloisecrowson
Jade, Washington, USA, 17, she/they, Awaiting diagnosis, IG @the_service_squad_
Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni
Jill, The Netherlands, 27, hEDS, she/her IG: @jillhubersmooren @leesdromen (eds focused sccount)
Jo, Lincolnshire, UK, 22, hEDS (possible cEDS) , she/they, IG & TT: @stripesandsunflowers_ TW: @jocopson_
Joey, Melbourne, Australia, 24, hEDS, he/him, IG: @mindful_joey
Lizzie, Sheffield, UK, 32, HSD, She/They, @slaywithsparkle
Maya, Somerset, UK, 27, hEDS, she/her, IG: @lovingchronicme TW: @mimogen22
Rebecca, Brighton, UK, 30, HSD, she/her, IG: @superpadg
Robin , Vancover, Canada, 30, hEDS, she/they IG: @robinhahnsopran YT: / @robinhahnsopran
Rosie, Pennsylvania, USA, 18, hEDS, she/her, TT: @heyitsrose_18 YT: @Heyitsrose18
Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot
Sol, Mexico City, Mexico, 29, hEDS, She/her, IG:@solprni @ehlersdanlos.mx
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Thank you for all your hard work creating this, Jenni, and to all other zebras involved for sharing our stories! As always, I feel so blessed to be a part of this project ✨
Thank you so SO much for getting involved again this year Robin!! Xx
@Chronically Jenni thanks for the wonderful vlog
I've been having an all round bad day (pain, fatigue, emotions, brain fog....) and so when I saw this video come out I cried with joy and relief; all the way through I felt understood because I understand and feel the pain suffering and fed-upness of the others with which I form a community even if we've never met... Thank you so much for enabling me to discharge my emotions (still crying) in a positive way (crying with joy and not just frustration and pain). again thank-you to you and all those who particiated.
I have hEDS and POTS and probably otherthings too ;)
Thanks so much for putting this together, and thanks to all who contributed!
I'm 47 years old and have hEDS, and I wonder what it feels like not to have EDS. Wish I could have just one day without EDS to know what it feels like.
Thank you for the opportunity to be a part of this!
Your video was wonderful, so much fun seeing all those beautiful and handsome zebra faces. Hello from Vancouver Island, Ive been diagnosed for over 20 years. It is hard getting help here where I live and that is hard. This is who I am though and i wouldn’t really want to be anyone else. I have prolapses, bendyness, and chronic pain which i try to ignore and fortunately its not that bad just like the feeling of too much lactic acid in my body as if I had been exercising a lot. I see an osteopath and that has really helped me.
Tx for doing this. Prayers
thank you hun,
I've just gone back to work and half regretting it as its so exhausting I haven't managed to see my friends since I started back in Feb. I have 5 days off this week and this is day 2/5 and I am 2days into a migraine. HSD plus everything that goes with it is a steaming pile of cr*p. chronic pain, fatigue, nausea, brain fog, etc etc I love working but it truly is pushing me to breaking having to deal with my health on top.
the guilt of passing it onto my kids as well is awful,
I found this video really interesting but sad . I saw your video about cruising with chronic illness and I’m booked to go on a cruise in October. I don’t have the same as you but I have M.E , Fibromyalgia , nerve damage , NES etc , r so many of the symptoms seem similar, especially the pain and fatigue. I am house bound most of the time or in bed , so this holiday will be a challenge but I’m determined to try 😜. Thank you for sharing your journey and how chronic illness can effect your life . ❤️
Very nice summary
Great video Jenni! I’ve missed your longer videos xxxxxxx
I make a Short with a clip to CTA, I hope is ok Jenny Thanks for all people un this video being Brave 🐳
Hi Jeni, I would like to take part next year if possible. Great video and awareness 👍🏻
Of course! I usually do a call out on here, Facebook and Instagram so definitely keep an eye out next march/April x
😢❤😊
Puedes comentar si tienes el síntoma de la piel muy flexible y estirada y como fue el diagnóstico para ayudar a aquellos que viven en lugares dónde los diagnósticos son más difíciles