What was it like finally getting a diagnosis of EhlersDanlos syndrome EDS

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http://youtube.com/watch?v=5rX1F2GN_oU

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. • This is the first video in the 2021 series and we are talking about the worst symptoms of HSD, hEDS, cEDS vEDS. From chronic pain and fatigue to dislocations there are huge lists of symptoms around but I want you to hear from people living with EDS on a daily basis what the worst symptoms they face are. • This video is dedicated in loving memory of Saarah Ahmed who wanted to take part in this series but sadly passed away before she could. Saarah lived with a very rare type of EDS called kyphoscoliotic EDS and she always wanted to raise awareness. Her family want her legacy to live on so please visit the links below to learn more about Saarah her advocacy work. • / saarah_ah_ • https://www.newsandstar.co.uk/news/19... • https://www.thesun.co.uk/news/1467636... • 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: / @voidycat_makes_things • Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: ‪@AyeshaShaSha‬ • 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: ‪@JennyCole1988‬ 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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