Our Diagnosis Stories || EDS / HSD Awareness Month
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- Опубліковано 14 тра 2019
- #EDSAwarenessMonth #HSDAwarenessMonth
Me and my beautiful dazzle are back and bigger than ever for this years Ehlers Danlos Syndromes and Hypermobile Spectrum Disorder Awareness Month 2019. This May we will be bringing you lots of videos sharing our lives with EDS & HSD to help fellow sufferers and help the rest of the world understand what living with these chronic conditions is really like!
This week we are talking all about our diagnosis stories; how we were diagnosed, who by, and how long it took.
Please support our fundraiser so we can help to ensure more doctors are aware of EDS so diagnosis isn't such a struggle.
www.justgiving.com/fundraisin...
If you liked this video please subscribe to my channel :)
You can also find me on other social media:
Blog: ChronicallyJenni.wordpress.com
Facebook: ChronicallyJenni
Instagram: ChronicallyJenni
Twitter: jennipettican
Mixcloud: www.mixcloud.com/jenni-pettican/
Email: chronicallyjenni@gmail.com
Patreon: www.Patreon.com/ChronicallyJenni
Kit: www.kit.com/chronicallyjenni
Music Credit: www.bensound.com/royalty-free...
Meet the Dazzle:
Amy, 23, hEDS, Dunblane, Scotland. Instagram & Snapchat: ymagunn
Beverley, 41, hEDS, Staffordshire, UK. UA-cam: Beverley Butterfly Blog: www.BloomingMindfulness.co.uk
Brittany, 25, hEDS, Washington, USA. Instagram: @brittanys_hope & @servicedog.jasmine Twitter: @brittany_app
Catie, 26, hEDS, North Carolina, USA.
Christina, 31, hEDS, Delaware, USA. Instagram: @fawnhope0206
Cosima, 21, hEDS, Switzerland. Instagram: @cecescrazylife
Gemma, 22, hEDS, Bedfordshire, England. Instagram: @gembaileysmith
Georgia, 20, hEDS, Cardiff, Wales. Instagram: @Georgia.elise
Jay, 40, hEDS, New Jersey, USA. Twitter & UA-cam: SuperFlyEDSGuy
Kilynn, 20, hEDS, Iowa, USA. Also has Type 2 Diabetes. Twitter: @tealzebra1 Instagram: @Ki_4ever_
Kim, 30, hEDS, Ireland. Instagram: @ChronicallyKim
Laura, 24, hEDS, Lincolnshire/Yorkshire, UK. Instagram: @LolaaMaple
May, 25, hEDS, USA. Instagram: @priceofgenetics
Nicole, 37, hEDS, Oregon, USA. Also has a visual impairment. Instagram: @SaunderNicole
Noah, 17, hEDS, Virginia, USA. Instagram: @Noah_Knicker.258 Snapchat: noah10Knick
Poppy, 15, hEDS, UK.
Rachael B, hEDS, 32, Illinois, USA. Instagram: @RachaelBangertPhotography
Rachael O, cEDS, 28, Texas, USA. Instagram: @ravishingnailswithrachel UA-cam: Living with Stripes
Jess & Shannon, 18 & 20, Hertfordshire, UK. Instagram: @JessGibson678 @ShannonHookerr
Sonia, hEDS, Illinois, USA. Instagram: @solo_1981 Facebook: sonia.lozano.503
Stacey, 25, hEDS, Colarado/Washington, USA. Instagram: @runtriveg
Sydney, 22, cEDS, Ohio, USA. Instagram: @ClinicallyChronically
Teri, 39, hEDS, Texas, USA.
Another awesome video honey what really stands out is how differently we all got diagnosed! If they had one test or just one type of dr who specialises it would make it a lot easier potentially I don’t know but it seems to be so different for everyone xx
I definitely agree. I think it's so difficult to get a diagnosis because EDS affects our body in so many different ways, and most doctors are only focused on one specific specialty. I really wish more primary care doctors were EDS aware, because I think that would help more zebras find their diagnosis sooner in life.
Living with Stripes I think you are right it’s not as rare as we think it’s just awareness that is low and that needs to change it shouldn’t have taken me 40years to get answers and to hear how disbelieved many of us are was just sad xx
Because it's multi systemic it's such a nightmare! And definitely agree that it's not rare just rarely diagnosed!
I was told I didn’t have EDS from an orthopedist because “those kids have really bad scars” 🤦🏼♀️
I'm so sorry you've had a rubbish experience unfortunately it's not uncommon. I hope you can get the care you deserve soon x
Thank you! I got my diagnosis now hopefully they can figure something out for a plan 💕🦓
@1:03
Do you have a UA-cam channel