What is Ehlers Danlos Syndrome ? || EDS & HSD Awareness Month 2020
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- Опубліковано 9 жов 2024
- 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.
In this week's video we answer the question What is EDS and we describe some of the emotions and symptoms we go through on a daily basis
If you found this video helpful or informative please consider donating to our fundraiser for the EDS society www.justgiving... . You can find more information about EDS & HSD by visiting ehlers-danlos.com
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 which 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: www.mixcloud.c...
Email: chronicallyjenni@gmail.com
Patreon: / chronicallyjenni
Kit: www.kit.co/chr...
Blog: www.chronicall...
Music Credit: UA-cam 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 UA-cam @IzzyKDNA
Jayme, 29, Chicago, Illinois, USA. hEDS. Instagram @msjaymelee
Jeannie, London, UK. hEDS. Instagram @jeannie_di UA-cam @JeannieDiBonHypermobility
Jenni, 24, Essex, UK. hEDS. Instagram @chronicallyJenni UA-cam @ChronicallyJenni 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
Thank goodness there is more awareness of EDS/HSD now. I'm 77, have struggled with these conditions my entire life, with dozens of doctors calling me a hypochondriac because my symptoms have been vague (by their standards). I'm actually very stoic, and with a very high pain threshold. I've had to be, in order to function, work, raise a family, etc. I only FINALLY got a correct diagnosis about 10 years ago, after seeing a neurologist for SPMS, who also happened to be familiar with EDS/HDS because his own child had it. It has been a long, lonely journey!
Amazing video! It is so powerful to see medical zebras explain what it is really like to live with EDS!
Thank you so much! x
Great video Jenni
Thank you so much Mandy! I hope you and your family can get the help you deserve soon! We have to hold onto that hope together for sure! x Spoons & Love x
Love from Italy to Jenni & all you lovely ladies (& gentleman) around the world🌎
Thanks so much Susan! Hope you're doing okay in Italy! Lots of love back x
Thank you
Thank you for watching x
Such a brilliant video Jenni, well done!
Aww Thank you so much Pippa! x
Awesome video, I have Classical EDS and I had my nails done with the zebra 🦓 print on my ring fingers. That’s how I was able to bring awareness to EDS. Excruciating extreme chronic pain and subluxation and dislocation, GERD, migraine headache and chronic fatigue. That’s what EDS is to me. Not to mention instability and making me a high risk for falling. I AM zebra 🦓 strong!
Great job, Jenni!
Thank you so much Penny!
Good one!!! You always do good work in trying to get others to understand what we go through. Thanks again.
Thank you Gordon! I'll keep trying my best until people start to listen x
I very much enjoy how you speak openly! I have had a huge issue being open, talking about my disability - Hydrocephalus. I am also trying to raise awareness on a very rare condition :) Thanks for the inspiration!
Thank you so much Danny! If you do decide to share about your own condition I'd love to hear about it! x
Thanks, Jenni, I have started making baby steps :) Come say Hi :)
You’ve inspired me to make my own awareness video on my channel ❤️ It’s not the best but it’s way more than I thought I would be doing a few months ago haha
That's amazing well done! x
Do u get migraines how do I get diagnosed is it blood work?
I have chronic migraines there's no direct test it would involve discussing your headaches and migraines with a neurologist and putting a management plan in place which can be really varied. Hope that helps x
Do you there have a UA-cam channel
In the description you can find information about everyone involved and their social media channels including UA-cam if they have one. Thanks for watching! x
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Alexis Fuhr troll