Living with Ehlers Danlos Syndrome ||  

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This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.
For more information on EDS please go to:
www.ehlers-danlos.org/
ehlers-danlos.com/
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You can also find me on other social media:
Blog: ChronicallyJenni.wordpress.com
Facebook: ChronicallyJenni
Instagram: @ChronicallyJenni
Twitter: @JenniPettican
Email: ChronicallyJenni@gmail.com
I want to say a huge thank you to everyone who got involved with this video, Lucy, Laura, Lexy, Kari, Shelby, Claire and Robin this video couldn’t have happened without you and it has meant a lot to me and each one of you is truly inspirational!
Here is all the information you need about everyone who was involved, in order of appearance. Be sure to follow their blogs and social media:
Lucy,20, Oxford. Diagnosed hEDS in 2015. Follow her on Instagram @lucy_henshaw63.
Laura, 22, Lincoln/Sheffield. Diagnosed hEDS in 2016. She also lives with POTS. Follow her on Instagram @lolaamaple. You can read her recent blog post about the benefits of exercise here: www.potsuk.org/stories/54. Laura is a 3rd year Biomedical science student, aspiring to work in genetics or astrophysiology. She is a former ballet dancer and last year completed an ultramarathon for EDS UK.
Kari, 24, Washington State. Diagnosed hEDS in 2016. Follow her on Instagram @chronicallyillbadass. She also lives with fibromyalgia, migraines, spinal stenosis and bipolar.
Shelby, 19, New York. Diagnosed hEDS in 2016. She also lives with POTS. Follow her on Instagram, Tumblr, Redbubble, and RU-vid @agirlisariot. Her gofundme campaign for her future service dog is coming soon.
Lexy, 25, Essex, Diagnosed hEDS 2015. You can find her blogs at:
SuperGirlChronicallyIll - supergirlchronicallyill.blogspot.co.uk
Spoonie Central - spooniecentralbeautyandfashion.wordpress.com
Heaven Scent Bath and Beauty - / heavenscentbathandbeauty .
She also suffers with Hyperadreanic POTS, Chiari Malformation, Scoliosis, Degenerative Disc Disease, Cervical Cranial Instability and GERD.
Claire,47, Middlesex. Diagnosed hEDS 2012. She also lives with POTS and nerve root damage, IBD and migraines. She was medically retired as a hospice sister in 2010. She has 3 children aged 14,18 & 21. You can find her blog at: www.painpalsblog.wordpress.com. Follow her on Facebook, Pinterest and Instagram @painpalsblog and follow her on twitter @ClaireSaul1
Robin, 35, London. Diagnosed hEDS 2015. He is interested in music, tennis, rugby, football, cooking, pop culture, languages and science. He is the Men’s support group coordinator at Ehlers Danlos Support UK. You can find him on twitter @MrRobinHosking.