It's crazy the amount of symptoms, conditions and suffering etc that eds patients have to go through to eventually get a diagnosis. So sorry to hear the loss of your brother and sister 😥. I wish you no more suffering and a healthy life x
I’m so sorry hear about your brother & sister 😔 that is heartbreaking. Thank you for sharing your story of your diagnosis, so elegantly done. I love how you are taken what you’ve been given and helping others whilst navigating your own journey; totally amazing 😍 Hello from Scotland 🏴 💕
My heart goes out to you for the sad loss of your siblings and yet you rise above this to share your inspiring story so we can keep trying to get answers. Here in Florida, my wonderful Dr is part of the huge network at Shands/U F Health yet she can’t refer me to anyone for genetic testing, hypermobility EDS or Mast Cell Activation Disorder. The best she can do is send me a couple hours away to the Mayo Clinic in Jacksonville which I will eventually do. Luckily, I married an MD, not that he knows anything about this either, but it gives me enormous creds with my physicians so they believe me…but at the beginning, in 2010, when this all started in NH, I was in bed for 2 years and no one knew what was going on. My husband made sure I was tested for everything possible. I was tested multiple times for MS, Lyme and Lupus. One evening, an ER dr (like everyone else, I was always near fainting and losing my balance) took me aside and suggested I stop going to local doctors because I had seen the best and the ER couldn’t do any better and get myself to Boston. Ha, I did (I had to get quite pushy about it) and got my first diagnosis of fibromyalgia at Mass General which made sense when I jumped at every trigger point but it didn’t address the anaphylaxis to nearly everything and neuropathy that gave me suicidal thoughts..I gave myself a year. I got anaphylaxis after taking Cipro which changed my life forever. My husband had a colleague who was a pediatric allergist and he got me into Brigham and Women’s, but my labs were 1 point off from WHO criteria for mast cell activation..sigh..so my diagnosis was fibromyalgia. Not one dr, ever, has checked to see if I was hypermobile. And for those who don’t know, in 2018 the FDA issued a warning that people with hypermobility were not to be given flouroquinolones the class of drug that is Cipro (the 2nd most prescribed anti-biotic) because it can lead to aortic tears and nerve damage…I don’t remember the exact wording. Wouldn’t you think it would be mandatory for every Dr who prescribes flouroquinolones to do a quick, several minute Beighton test check to see if the patient is hypermobile? The leaps in anaphylaxis cases numbers are huge yet physicians don’t know anything about the relationship of hEDS and Cipro etc..how crazy is this? Many kudos to the Ehlers Danilo’s society which does an amazing job of putting out wonderfully informative videos like this and I am deeply appreciative. Thank you for doing this and helping us learn more.
Thank you so much for sharing your experience. I have a question, is the eyes open when sleeping, left side numbness, sprains also veds symptoms? I have lipodema and EDS but haven’t been tested yet for Veds.
I am not too familiar with normal EDS but I believe that sleeping with eyes open and sprains are common cross over systems. The numbness for me is related to my MS
It's crazy the amount of symptoms, conditions and suffering etc that eds patients have to go through to eventually get a diagnosis. So sorry to hear the loss of your brother and sister 😥. I wish you no more suffering and a healthy life x
It took me 40 years to get a diagnosis.
Thank you for sharing your story! Let’s keep on educating medical 🏥 folks and the general public. 🌻🌻🌻
I’m so sorry hear about your brother & sister 😔 that is heartbreaking. Thank you for sharing your story of your diagnosis, so elegantly done. I love how you are taken what you’ve been given and helping others whilst navigating your own journey; totally amazing 😍 Hello from Scotland 🏴 💕
Thank you for those kind comments! I’d love to see Scotland one day!
I'm so sorry for your loses, and thanks for sharing your story. A big massive hug goes from Spain 🇪🇦
My heart goes out to you for the sad loss of your siblings and yet you rise above this to share your inspiring story so we can keep trying to get answers. Here in Florida, my wonderful Dr is part of the huge network at Shands/U F Health yet she can’t refer me to anyone for genetic testing, hypermobility EDS or Mast Cell Activation Disorder. The best she can do is send me a couple hours away to the Mayo Clinic in Jacksonville which I will eventually do.
Luckily, I married an MD, not that he knows anything about this either, but it gives me enormous creds with my physicians so they believe me…but at the beginning, in 2010, when this all started in NH, I was in bed for 2 years and no one knew what was going on. My husband made sure I was tested for everything possible. I was tested multiple times for MS, Lyme and Lupus. One evening, an ER dr (like everyone else, I was always near fainting and losing my balance) took me aside and suggested I stop going to local doctors because I had seen the best and the ER couldn’t do any better and get myself to Boston. Ha, I did (I had to get quite pushy about it) and got my first diagnosis of fibromyalgia at Mass General which made sense when I jumped at every trigger point but it didn’t address the anaphylaxis to nearly everything and neuropathy that gave me suicidal thoughts..I gave myself a year. I got anaphylaxis after taking Cipro which changed my life forever. My husband had a colleague who was a pediatric allergist and he got me into Brigham and Women’s, but my labs were 1 point off from WHO criteria for mast cell activation..sigh..so my diagnosis was fibromyalgia. Not one dr, ever, has checked to see if I was hypermobile. And for those who don’t know, in 2018 the FDA issued a warning that people with hypermobility were not to be given flouroquinolones the class of drug that is Cipro (the 2nd most prescribed anti-biotic) because it can lead to aortic tears and nerve damage…I don’t remember the exact wording. Wouldn’t you think it would be mandatory for every Dr who prescribes flouroquinolones to do a quick, several minute Beighton test check to see if the patient is hypermobile? The leaps in anaphylaxis cases numbers are huge yet physicians don’t know anything about the relationship of hEDS and Cipro etc..how crazy is this?
Many kudos to the Ehlers Danilo’s society which does an amazing job of putting out wonderfully informative videos like this and I am deeply appreciative. Thank you for doing this and helping us learn more.
Hey, fellow biochemist (neuroscience, as well)! I am so sorry for your losses. This condition is so unpredictably devastating. It's...a lot.💓
Hi do you have any insight into how crispr could be used
Thank you for sharing your story.
Thank you for sharing your story!♥️
I'm sorry for your losses. I'm amazed at how many symptoms I share with you and your sister.
Ohh and you are very welcome to Spain 🥳🥳🥳🥳
I may just take you up on that! I have only been as far west as italy and need to hit up Spain and Portugal!
I'm sorry that you had to lose both brother and sister to get your diagnosis. 😞
I'm in SD...yay! I'm getting the run around with a diagnosis.
I'm sooooo sorry for your loses.
Sending my L🕯GHT and L💗VE to you and yours. 💘💘💘
Hello! I live in Escondido!
any update on your diagnosis?
@@sarahfulop206 nope...I have a 3rd RA doc now, so I'm hoping that this one will work with me. ❤️🔥🤙🏼💯
did you see a genetists?
Thank you so much for sharing your experience. I have a question, is the eyes open when sleeping, left side numbness, sprains also veds symptoms? I have lipodema and EDS but haven’t been tested yet for Veds.
I am not too familiar with normal EDS but I believe that sleeping with eyes open and sprains are common cross over systems. The numbness for me is related to my MS