Things We Wish You Knew About EDS || EDS & HSD Awareness Month 2020
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- Опубліковано 18 тра 2020
- 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 asked my wonderful dazzle of zebras to tell me about some of things that they wished other people would know and understand about what it's like to live with Ehlers Danlos Syndrome or Hypermobility Specturm Disorder. It includes discussion about the impact of living with an invisible illness as well as the uncertainty and how many of us hope the coronavirus pandemic may bring a new level of understanding to those who don't live with chronic illnesses.
If you found this video helpful or informative please consider donating to our fundraiser for the EDS society www.justgiving.com/fundraisin... . 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 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: www.mixcloud.com/jenni-pettican/
Email: chronicallyjenni@gmail.com
Patreon: / chronicallyjenni
Kit: www.kit.co/chronicallyjenni
Blog: www.chronicallyjenni.wordpres...
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 @Izzy Kornblau
Jayme, 29, Chicago, Illinois, USA. hEDS. Instagram @msjaymelee
Jeannie, London, UK. hEDS. Instagram @jeannie_di UA-cam @Jeannie Di Bon
Jenni, 24, Essex, UK. hEDS. Instagram @chronicallyJenni UA-cam @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
I just have to say thank you so much!!! I suffer with EDS, Fibromyalgia, IBS, Mast cell activation, and many other sublet diseases. You have perfectly described how I feel, which can be so incredibly hard to translate to others. I love that I'm not alone in this disease, and that there are others who understand my pain. I just hate that they have to suffer like I do. I wish others understood us, and had empathy for our situation. We need so much help as a community, and we deserve to be seen and heard.
Aww Kat thank YOU! It's so powerful to know we are not alone. Very True! Spoons & Love x
Have watched this a few times now. It really spoke to me. I identified so strongly with all of these. This was very well done and greatly appreciated. I'm sending it to friends and family to help then get a better feel of what this is like to live with. Are many of you others with eds also experiencing debilitating symptoms this year? I think this has been the hardest year of my life and I'm a 37 yr old dude who had been through a lot. My symptoms this year have been multi systemic and completely debilitating.
Thank you so much I'm so glad! I've done lots of videos for EDS awareness month over the years which are all playlisted on my channel page if you'd find them helpful too. I think this year has been so hard for so many of us with the pandemic getting in the way of what little care and support we usually have. Please feel free to reach out on my facebook support group which is linked in the description of this video and if you are based in the UK I know EDS UK has a great Mens support group too as I know there are less resources out there for men x Hope thats helpful x
Excellent information! Had me in tears as I understand all too well the pain involved with eds! I suffer with HAE (Hereditary Angioedima) type 3, better known now as HAE with normal labs. Thank you for sharing Jennie, and everyone from around the world! This is amazing work! Btw, don’t respond to the wanna be friends comment, it’s a scam and these people will attack and hack your account and steal your followers! Have a great day everyone!
Thank you so much Billy! Sorry for making you cry! I'm going to get rid of them thank you! x
Again, another awesome video ! Ty for all you do for us zebras in helping to educate our friends and families!
Thank you so much Kat! I really hope it can help people communicate some of the things we can't always get across when we need to x
FANTASTIC JOB. THANKS JENNI
Thank you so much Gordon!
Another great video, Jenni. Thank you xxxxxxxxxxx
Glad you liked it!
I love the idea of being in a Dazzle of Zebras! That's a lovely phrase for our group.
It is the actual name for a group of zebras! Welcome to the Dazzles! x
@@ChronicallyJenni can I join? I'm in USA georgia specifically
My boss was talking about his brother not realizing something was wrong with his bladder when he had complications due to a surgery that cause him pain. When I casually mentioned that as someone who's foot feels that I've been walking on Legos for the past 9 years, my brain does not always register that the pain is different if something is wrong with my foot... my foot is always yelling that it's in pain so my brain just has learned to push that aside, so I did not realize that I had large wart that developed on my foot and even knowing it was there I really did not feel it. 🤷♀️
And his response was "wait what you don't even have a limp"... -_- cuz like, it's been 9 years, it always hurts the same at the end of the day if I walk on it or not, so I might as well do what I can now before I can't anymore 🤷♀️
Oh my goodness. The popping joints while I’ve been asleep has been happening to me for this last few weeks. I’ve been in so much pain and it seems like every day a new joint hurts. I’m so tired of it and it’s driving me close to a breakdown
Lots of love! Make sure you're getting the help and support you need, It's not fun but we are all here for you x
👏🏻👏🏻👏🏻👏🏻🥰
Thank you so much for being involved Raquel!
Wish I was in the UK instead of USA bc here they don't think its painful
Unfortunately I don't think it's a country thing It's just a case of finding the right doctor who is knowledgeable and there aren't very many of those! There is a great list of medical professionals who understand EDS on the EDS society website but if you let me know what state you're from I might be able to put you in touch with someone for advice. Spoons & Love x