Happy May Everyone! You know what that means? It’s EDS Awareness Month! I was diagnosed with Ehlers Danlos Syndrome last February and it’s been a long battle ever since. I started off by fighting the comorbities that come with EDS, for me that’s POTS and a CSF leak. These are now both under control with daily medications and after 4 surgeries, but my EDS is a huge problem as my joints, especially, seem to just be getting worse. Ehlers Danlos Syndrome is such a rarely talked about condition that I knew it was really important to do my bit the #EDSAwarenessMonth !
This video has been a big project which I’ve been working on for a few weeks. I managed to cut 48 mins of video from 8 different people and turn it into a 18 minute video explaining, as honestly as possible, what its like to live with this rare, 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. Despite the pain and fatigue involved in editing it all together this is a project I am very proud of and hope helps as many people as possible. Thank you so much for watching, I hope you learn and enjoy 🙂
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.
Laura, 22, Lincoln/Sheffield. Diagnosed hEDS in 2016. She also lives with POTS. Follow her on Instagram.You can read her recent blog post about the benefits of exercise here: http://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.
Lexy, 25, Essex, Diagnosed hEDS 2015. You can find her blogs at: SuperGirlChronicallyIll – Spoonie Central – Heaven Scent Bath and Beauty . 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 here. Follow her on Facebook and Instagram
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.