All these years and I have to find out about what I (99% have) through a Facebook post my mom saw describing a woman's terrible journey through getting properly diagnosed. Mom told me that this woman's story was MY story and I needed to look up EDS. I did. I'm sitting here almost in tears because it explains every aspect of my life, minus a few other issues related to another health condition I have). Doctors have consistently failed to properly diagnose me all my dang life and here I am disabled and unable to earn a living, still, in my 40s and I see that there is no financial help for me, even if I did magically get a diagnosis. At least I can finally start finding help online through people's experiences and advice. Maybe I can help make my life a little more comfortable.
I have hypermobile type Ehlers Danlos syndrome, and recently started Mestinon to treat my POTS/dysautonomia and gastroparesis/dysmotility issues. It's nice that they're found a medication that can treat multiple issues that are associated with EDS. It's reduced some of my fatigue and exercise intolerance as well.
A lot of great information here; however, I'm confused about the pronunciation of it as L-ers Danlos Syndrome, opposed to A-lers Danlos Syndrome (the original/actual[?] pronunciation). Has anything changed the past few years where we interchangeably use either pronunciation now, or does he just use the common mispronunciation in this video? 🤔 I often hear patients refer to it as L-ers, but all of my physicians (including genetics) still use the original, A-lers. I'm genuinely curious.
Its named from Alexandre Danlos (a French dermatologist) and Edvard Ehlers who was a doctor from Norway. So however the Norwegian phonetics are, that is probably most accurate. In my study, both of being an EDS patient and studying Icelandic and its sister languages, it is AY-lers Hope that helps!
I have vEDS that isn’t really being treated, which caused me to be permanently, legally blind {in a way glasses won’t help and they’re not willing to do surgery because they think the risk outweighs the benefit} and I was lifeflighted due to a subarachnoid hemorrhage in my sleep they said I shouldn’t have awakened from. There have been many more severe events, but these are the most recent. I have severe symptoms daily and can no longer handle the myriad of symptoms that have become unbearably painful despite pain medication. It’s too bad places like this are prohibitively expensive given the contract to bypass insurance maximums. It would be nice to find doctors that really want to help patients, rather than make a bunch of money off of them. Meanwhile, I’m just waiting for my next severe vascular event so I can finally be done with the constant severe pain and begging doctors that know nothing about EDS, POTS, and MCAS, to help me.
All these years and I have to find out about what I (99% have) through a Facebook post my mom saw describing a woman's terrible journey through getting properly diagnosed. Mom told me that this woman's story was MY story and I needed to look up EDS. I did. I'm sitting here almost in tears because it explains every aspect of my life, minus a few other issues related to another health condition I have). Doctors have consistently failed to properly diagnose me all my dang life and here I am disabled and unable to earn a living, still, in my 40s and I see that there is no financial help for me, even if I did magically get a diagnosis. At least I can finally start finding help online through people's experiences and advice. Maybe I can help make my life a little more comfortable.
I have hypermobile type Ehlers Danlos syndrome, and recently started Mestinon to treat my POTS/dysautonomia and gastroparesis/dysmotility issues. It's nice that they're found a medication that can treat multiple issues that are associated with EDS. It's reduced some of my fatigue and exercise intolerance as well.
A lot of great information here; however, I'm confused about the pronunciation of it as L-ers Danlos Syndrome, opposed to A-lers Danlos Syndrome (the original/actual[?] pronunciation). Has anything changed the past few years where we interchangeably use either pronunciation now, or does he just use the common mispronunciation in this video? 🤔 I often hear patients refer to it as L-ers, but all of my physicians (including genetics) still use the original, A-lers. I'm genuinely curious.
Its named from Alexandre Danlos (a French dermatologist) and Edvard Ehlers who was a doctor from Norway. So however the Norwegian phonetics are, that is probably most accurate. In my study, both of being an EDS patient and studying Icelandic and its sister languages, it is AY-lers Hope that helps!
It is Ehlers-Danlos Syndrome. Therefore, you hear, L-ers as the pronunciation.
Hi how would I get in connect with you
You can contact us here: bit.ly/LearnMore_CCN
Where are you located?
1010 E McDowell Rd, Phoenix, Arizona
I have vEDS that isn’t really being treated, which caused me to be permanently, legally blind {in a way glasses won’t help and they’re not willing to do surgery because they think the risk outweighs the benefit} and I was lifeflighted due to a subarachnoid hemorrhage in my sleep they said I shouldn’t have awakened from. There have been many more severe events, but these are the most recent. I have severe symptoms daily and can no longer handle the myriad of symptoms that have become unbearably painful despite pain medication. It’s too bad places like this are prohibitively expensive given the contract to bypass insurance maximums. It would be nice to find doctors that really want to help patients, rather than make a bunch of money off of them. Meanwhile, I’m just waiting for my next severe vascular event so I can finally be done with the constant severe pain and begging doctors that know nothing about EDS, POTS, and MCAS, to help me.
ابحث عن طبيب مسلم واجب عليه أن يساعد بدون مال هو مسلم يعرف ذلك أو اذهب الى مستشفى اسلامى أو خير برعاية مسلمين و الدعاء لله وحده رب العالمين
سامحيني يجب أن نساعدك دائما الشفاء من الله
Compression stockings now there is evidence from random controlled studies . Please look into compression stockings for pots patients
I think it’s great you have an interest in EDS ....wish I were closer,lol