Thank goodness there is more awareness of EDS/HSD now. I'm 77, have struggled with these conditions my entire life, with dozens of doctors calling me a hypochondriac because my symptoms have been vague (by their standards). I'm actually very stoic, and with a very high pain threshold. I've had to be, in order to function, work, raise a family, etc. I only FINALLY got a correct diagnosis about 10 years ago, after seeing a neurologist for SPMS, who also happened to be familiar with EDS/HDS because his own child had it. It has been a long, lonely journey!
Awesome video, I have Classical EDS and I had my nails done with the zebra 🦓 print on my ring fingers. That’s how I was able to bring awareness to EDS. Excruciating extreme chronic pain and subluxation and dislocation, GERD, migraine headache and chronic fatigue. That’s what EDS is to me. Not to mention instability and making me a high risk for falling. I AM zebra 🦓 strong!
Thank you so much Mandy! I hope you and your family can get the help you deserve soon! We have to hold onto that hope together for sure! x Spoons & Love x
I very much enjoy how you speak openly! I have had a huge issue being open, talking about my disability - Hydrocephalus. I am also trying to raise awareness on a very rare condition :) Thanks for the inspiration!
You’ve inspired me to make my own awareness video on my channel ❤️ It’s not the best but it’s way more than I thought I would be doing a few months ago haha
I have chronic migraines there's no direct test it would involve discussing your headaches and migraines with a neurologist and putting a management plan in place which can be really varied. Hope that helps x
In the description you can find information about everyone involved and their social media channels including TH-cam if they have one. Thanks for watching! x
![All That You Can't See: Living with Ehlers Danlos Syndrome [CC]](http://i.ytimg.com/vi/ENuOE-C9WJs/mqdefault.jpg)
Thank goodness there is more awareness of EDS/HSD now. I'm 77, have struggled with these conditions my entire life, with dozens of doctors calling me a hypochondriac because my symptoms have been vague (by their standards). I'm actually very stoic, and with a very high pain threshold. I've had to be, in order to function, work, raise a family, etc. I only FINALLY got a correct diagnosis about 10 years ago, after seeing a neurologist for SPMS, who also happened to be familiar with EDS/HDS because his own child had it. It has been a long, lonely journey!
Awesome video, I have Classical EDS and I had my nails done with the zebra 🦓 print on my ring fingers. That’s how I was able to bring awareness to EDS. Excruciating extreme chronic pain and subluxation and dislocation, GERD, migraine headache and chronic fatigue. That’s what EDS is to me. Not to mention instability and making me a high risk for falling. I AM zebra 🦓 strong!
Great video Jenni
Thank you so much Mandy! I hope you and your family can get the help you deserve soon! We have to hold onto that hope together for sure! x Spoons & Love x
Love from Italy to Jenni & all you lovely ladies (& gentleman) around the world🌎
Thanks so much Susan! Hope you're doing okay in Italy! Lots of love back x
I very much enjoy how you speak openly! I have had a huge issue being open, talking about my disability - Hydrocephalus. I am also trying to raise awareness on a very rare condition :) Thanks for the inspiration!
Thank you so much Danny! If you do decide to share about your own condition I'd love to hear about it! x
Thanks, Jenni, I have started making baby steps :) Come say Hi :)
Good one!!! You always do good work in trying to get others to understand what we go through. Thanks again.
Thank you Gordon! I'll keep trying my best until people start to listen x
Thank you
Thank you for watching x
Amazing video! It is so powerful to see medical zebras explain what it is really like to live with EDS!
Thank you so much! x
Great job, Jenni!
Thank you so much Penny!
Such a brilliant video Jenni, well done!
Aww Thank you so much Pippa! x
You’ve inspired me to make my own awareness video on my channel ❤️ It’s not the best but it’s way more than I thought I would be doing a few months ago haha
That's amazing well done! x
Do u get migraines how do I get diagnosed is it blood work?
I have chronic migraines there's no direct test it would involve discussing your headaches and migraines with a neurologist and putting a management plan in place which can be really varied. Hope that helps x
Do you there have a TH-cam channel
In the description you can find information about everyone involved and their social media channels including TH-cam if they have one. Thanks for watching! x
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