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Living with Rare Forms of EDS || vEDS & kEDS ||

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A lovely viewer wanted to see more people with rarer forms of EDS being represented this awareness month, I agreed and took on the challenge. I've been wanting to find out more about other type and get more different types involved in my videos so I was glad to be pointed in the direction of Katie (The Translucent one) who lives with Vascular Ehlers Danlos Syndrome & Poppy Akinola who lives with Kyphoscoliotic Ehlers Danlos Syndrome.
In this video these lovely ladies share what its like to live with an extremely rare form of EDS and the difficulties being rare can cause.
Katie - @TranslucentOne - / @translucentone
Poppy - @PoppyOA -
/ @poppyoa
poppyoa.com/
You can also find me on other social media:
Blog: ChronicallyJenni.wordpress.com
Facebook: ChronicallyJenni
Instagram: @ChronicallyJenni
Twitter: @JenniPettican
Email: chronicallyjenni@gmail.com
If you liked this video please hit subscribe!
#ZebraStrong #EDSAwarenessMonth

Опубликовано:

23 авг 2024

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Комментарии : 21

@candice2875 2 года назад

“Don’t focus on it too much”. If I had a dollar for every time someone ignorant including my own family said this to me. It’s impossible to not think about it when you’re in constant debilitating pain and dealing with this 24/7.

@Laughandg0 Год назад

I appreciate hearing their stories. I live in Alaska with Kyphoscoliotic Ehlers Danlos Syndrome. I was diagnosed in 2014 when I was 18. I would not suggest you live in a cold area as is makes the pain that much worse and when it comes to the issues of walking I completely understand her when she says you just cant walk far anymore. I did underwater PT to help and it did wonders until insurance ran out. I have Alaska Native healthcare but they do not treat chronic conditions which has made my life hell. Even now 4 years later there isnt much more being done in Medical Schooling to help Doctors and Nurses understand the signs of what these conditions can do. I cant tell you how many times I was offered morphine or oxy in the ER because they just wanted to put a bandaid on the problem.

@mayaflynnster 5 лет назад

The worst symptom IS emotional! Couldn't have said it any better myself! But being a zebra....we're stronger than we seem!

@PoppyOA 6 лет назад

thank you for giving me the opportunity to share my experiences! x

@ChronicallyJenni 6 лет назад

Thank you so much for taking part lovely! xxx

@jacquec.8791 Год назад

Thank you for doing this.

@oliverlikescats4736 6 лет назад

It's infuriating that doctors don't listen to patients trying to explain their conditions. Hell, I've had multiple medical professionals pretend they know more about my type 1 diabetes than I do. In other words, this happens in both rare and common diseases. In this case, raising awareness for rare diseases isn't going to fix egotistic doctors. That requires a cultural shift. I had a nurse at a hospital refuse to check my blood sugar in the middle of the night. If my blood sugar had been low enough, I could have died in my sleep. They don't fucking care. You should NEVER be turned away in a possible emergency because a douchebag doctor won't listen. Better to check and rule something out than ignore it and die.

@ChronicallyJenni 6 лет назад

It is so ridiculous how some doctors behave but there's just so much pressure on the health service doesn't help. but yes I have had egotistical doctors in the past who have told me I'm wrong and made me cry telling me nothing was wrong who I wish I could go back to and be like you totally missed a csf leak! x Makes me so mad everyone deserves to get the care they need x

@rethinkeverything2982 2 года назад

Love my zebra 🦓 sisters 😘🙏🙌

@sulazen8902 4 года назад

Hi! I too have K EDS. I finally got the subtype back from Mayo. The doc's thought it was H EDS. I am 54 and my "floppy body" has hardened and I am not a severe as Poppy. I have many many issues and am starting a channel to talk about what it is like for me at 54, living undiagnosed, hacks and more. I hope to hear from you ladies :)

@ChronicallyJenni 4 года назад

Hey Susanne I've just subscribed can't wait to see your videos and hear more about your kEDS experiences ! x

@maartje6762 4 года назад

Same here! Only im 14

@saaraha262 4 года назад

Maartje Wolk I have kEds, im 19, if you want to talk im here. My insta is @saarah_ah

@Rae-qf7xv 6 месяцев назад

My nhs consultant insisted it was fibromyalgia and forced an antidepressant on me. Very arrogant and didn't care.

@BeverleyButterfly 6 лет назад

Thank you Katie and poppy for sharing this was such an interesting video thank you xx

@ChronicallyJenni 6 лет назад

Thank you Beverly x

@commentah222 6 лет назад

KEDS sounds similar to Marfan syndrome. With marfan you also have the same problems with eyes and aorta

@ChronicallyJenni 6 лет назад

Those things are very similar I think its the hypertonia and flopiness from that which makes kEDS so different x

@oliverlikescats4736 6 лет назад

Many types of EDS have marfanoid features. Marfan is a cousin to EDS.

@maartje6762 4 года назад

Everyone with type 6 raise your hands! 'realises there are only like 30 people in the world so this is not gonna work😂'

@ChronicallyJenni 4 года назад

Hey Maartje I'm doing some more awareness videos this year and would really love to have you involved if youd be interested? drop me an email at chronicallyjenni@gmail.com