Ehlers-Danlos, POTS and more updates
HTML-код
- Опубликовано: 8 сен 2024
- Im so sorry that it has taken me so long to do a video, I got rushed to hospital with internal bleeding and was in over 7weeks and then contracted two infections. I went home then went in again with seizures, it's been hectic! I have seen so many different doctors, rhuematologist, psyio's, ot's, genetics, neuros...you get the picture lol. They have said i do have EDS Ehlers-Danlos Syndrome, im being sent for tests for type 4 vascular. I have another heart condition which i am being sent to a specialist for. I am due to go to NHNN to see Professor Mathias for my POTS as i may also have ANS failure or another lot of dysautonomia ontop of POTS. I have endrometriosis too and am due to go to theater for it. I am finally being taken seriously its taken my 7years to get here but im here and i am so grateful to be here and to have had the determination to get the care and treatment i deserve. I will keep everyone updated with it all. I hope you are all ok I send my love to you and hugs xxxxxxxxxxxE
Was it you I met in Kingsmill Hospital Last week? I had never heard of EDS before and I just wanted to say how much I admire the way you handle it.
You are one very brave young lady.
I'm so sorry to hear that, Jodie. :(
You've been through way too much! It's ridiculous! But I still look up to you for continuing to spread awareness and keeping your positivity up. Truly inspirational, as I've said before. :)
Also, props to you for all the editing you did in this video! You're really getting the hang of this vlogging thing, hehe.
That's awesome that you are being taken seriously!
jodie and family...loved you for yearsssssssssssssss hope you and family are.......cooool!!xxxx
For someone with a lot of problems, you are a very beautiful young lady and a great inspiration to a lot of people with the same illnesses. I wish there were cures for all these illnesses so no one has to suffer. I'm sorry to hear about what happened to you.
That's awesome that you are finally being taken seriously!
Mine has also mutated.
Sorry u r not well I know exactly how you feel...Wish you wellness & a Cure...
Stupid character limit...
Anyway, I wish you all kinds of luck with everything, and I am so glad you're finally being taken seriously and getting the answers you need! Keeping my fingers crossed that no other horrible health things come your way, and that the issues you have now will somehow right themselves and you can go back to living your life the way you should! They need to find a magic cure for everything, eh? That would be wonderful...
And Charlie is adorable!! Such a character. :D
My goodness you've been through a lot in such a short amount of time! It's good to see you're still maintaining your positivity and strength, though!
How annoying are floaters? I have them, too. Sometimes I think, "Ugh...is that a bug flying around?" and then realize NOPE! It's just the buggers (pardon my language) in my eyes!
You're lucky you're only just now getting glasses, though. I've had them since I was about 7. Geek for most of my life!! haha.
thankyou, i just see it as i have to be strong if i dont no-one will be x
glad you got referred to a rheumy fingers crossed you get some answers soon! really hope you do x
You have amazing style, those pants!
thankyou x
Love to see this lovely person again one day...lit up my house when she visited . Glad I saved her from freemason abuse with their Piller to post madness
Having a good doctor is a definite bonus! But that all sounds very scary. Sight is something most of us take for granted... A guy I was in uni with has recently lost his sight, and he's younger than me. It happened quite suddenly, too. Started in his peripheral vision and got progressively worse. Now he needs a guide dog. =/
I certainly hope all you'll need is glasses!! *fingers crossed*
Hi Jodie - just wondering if you've seen Prof Mathias for the autonomic testing yet? I had them last month and he diagnosed my POTS. He's a really lovely man and the tests are SO thorough. Is it Prof Aziz you're seeing for the gastro issues? Good luck with everything.
Kingsmill is in Mansfield, Nottinghamshire, England anyway good luck for the future and have a great Christmas
hi, i went to the nhnn yeh im waiting on an admittion date for a weeks stay got alot going on and goign to have full testing as they feel my Dysautonomia is more widespread, yeh getting refered for gastro too. thanks, glad you had a positive experience there x
Hi, I don't think it was me i don't have a kings mill hospital where i live
Thankyou for your kind message x
Jodie hope you okay mate in sort of but severe headaches.
Hello how are things now ?
they do need a cure! we wish lol its horrible knowing that theres millions of us and thousands dying from complications from it yet NOTHING has been done for us scary times. yeh theres alot of health stuff cropping up, i edited alot outta the video cuz didnt want to put out how its got alot worse, im staying positive and charlie is my rock haha when hes not wrecking my wallpaper!! x
not all people with EDS type 4 have the facial characteristics, I would print information off for your doctor or give her websites where she can research for herself does she specialise in this do you know? if not you can request to be sent to a rhuematologist and a genetics for proper diagnosis and testing x
its hard getting blood lol they can only ever get a dribble in one tube on a bad day on a good one they can only get anough to fill half a tube lol
hiya sorry to hear that hun, have they sent you on to someone who can diagnose whether you have eds or not? typically veins are visable more so on the chest area face top on legs, stomach ect. my veins dont tend to buldge cuz i have collapsed veins due to the stretchyness x
sure ok
it is anoyying yeh lol i hate it, my vision has been bad since i was younger and had the floaters and loss of vision worsening for about 6years, but i refused glasses! but now its impossible to do daily things as every single thing i see is blurred :( and my right eye is losing its sight! i hate this stupid eds arghh but she said if it suddenly has a rupture they will fix it so im thankful i have such a good doc on the ball with it all xx
Sending regards to jodie aldabest
H Jodie my name is Hannah and I have Elhers Danlos and POTS I am 14 and would like to talk to someone x
Sorry I'm not sure how to inbox people would you like my gmail?
No sorry I don't see Dr whitehouse
I LOVE u
So, which type do you have? :(
type 3 and 4
you can inbox me if you want hun