Hi everyone I'm someone who just got to know this amazing lady called Jade Lynch - a scared lady who has just being told that 'WE’RE EXPECTING YOU TO DIE'.
Jade has Ehlers-Danlos syndromes (EDS), GASTROPARESIS, SVT & Pots.
In Jade's words-
A Rare Disease- Having any Disease is horrible but having one that most doctors don’t know of is even worse, Takes years for a diagnosis, after many doctor visits and hospital visits and still being told “Your making all this up it’s in your head”
After 13 psychiatrists,
To be told you “We have a diagnosis for you”
Those words alone took away pain because you knew you could finally tell your doctor that “This is what I have, I’m not crazy like you thought”
I’ve a lot of conditions but my rarest ones being Ehlers Danlos Syndrome & Gastroparesis!
“ I didn’t say that” . I’m tired of it every time I go to back to one of my doctors they’ll always say something incredibly different and take back what they said in the previous visit it’s happening way to often.
My health isn’t getting better it’s getting worse.
They’re not doing much to help.
I’m in weekly, I’m in Dublin nearly eveyweek and it’s so tiring and expensive.
This journey isn’t getting easier and the more doctors involved the harder it’s getting because they’re not communicating.
Cardiology have now taking me off more cardiac procedure lists because my weights to low and I’d die on the table.
My bloods will not stabilise.
My weight won’t go up without starting my new treatment which isn’t being pushed by doctors and we’re waiting for a bed in Galway which is ridiculous because I feel like I’m being left until i become so critical it will probably be to late....
It’s not been easy, if anything it’s getting harder and I’m tired of pretending that this journey is easy. Ehlers Danlos syndrome needs to be more recognised by doctors.
There’s no Cure , nothing we can do to make it all get easier but try find things that help!
For me just being diagnosed helped.
I’m Rare and Unstoppable!
This picture is real and raw , not every day is so smiley....
Jade who lives near Westport, Co. Mayo Ireland needs to get to London or anywhere not in Ireland to see a specialist for her condition to see if anything can be done to prevent further heartbreak and suffering , Expenses through this all have been so much traveling weekly to Dublin, hotels , and now expenses to get to London to see a specialist would be amazing , So this is where we come in.... We can help to prolong her life that she so desperately wants to live but she needs our help in kindness, by donating whatever we can.
Although I don't know Jade that well, speaking to her, hearing her story and seeing how she has helped sooo many diagnosed with the same thing. She is a lady that puts everyone before herself. Now it's time we put her type of people before us.
Follow her on facebook Jade's crazy Journey.
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