it's always been wild to me how cleds isn't on the standard eds/connective tissue disorders genetic panels. like stephen said it's so hard to get any genetic testing, let alone for cleds. i know so little about how genetics works as a medical discipline but it seems like a huge oversight. i wonder how many people diagnosised with heds or hsd actually have cleds.
I'm sorry you had to deal with so many Doctors denying you. This happened to me as well and still does. I was waking up vomiting and passing out when I stood. 12 doctors in 8 years and none of them even ordered an endoscopy. They accused me of an eating disorder and mental illness. I had to degrade to the point of disability from dysautonomia and POTS before a doctor finally diagnosed me. I am still fighting for my pots diagnosis and after my last cardiologist said i didnt have it after not even doing the orthostatic correctly I get panic attacks before my appointments now :(
"Passing out when I stood" screams POTS. Heck, it boggles the mind a doctor can't figure that out. I tell my primary what tests or imaging I want. She knows I know much about EDS than her.
Zebra strong famely 🦓👍Genetics sends my daughter and me the door, because people with EDS have a different look!? 😏 Thankful to have the EDS community in the Netherlands. Shout out to DR. Emile Janssen and all the specialist. Thank you Project Echo, thank you Ehler Danlos society 🦓
I’d love to know more about EDS specific anesthesia. I’m newly diagnosed and my daughter had surgery a month or so ago- the anesthesiologist laughed at me when I asked if he could use ketamine for her- because I had read something about it helping reduce possibly causing fibromyalgia/hyperalgesia from surgical “trauma”. I didn’t know enough to argue. But I let it go because she’s only 12 and I chose to believe that the risks are mostly only after YEARS of chronic pain. As I type that I realize she’s been in pain since she was a toddler so 🤷🏼♀️ Anyways…. I’ve always had bad recovery from surgeries and a mixed experience with being anesthetized. Dentist numbing doesn’t work very well, twilight anesthesia seems to work REALLY well- being put all the way out seems to last longer in me than other people. And I have so much pain after every surgery.
I have the Classical type and I totally understand what he’s dealing with, the constant pain, the dislocation of joints, my right shoulder is the worst joint that seems to give me problems, I am a housekeeper at a bowling alley and I have dislocated my right shoulder just from cleaning a bowling alley table, I am also a janitor at another job and I did the same thing with cleaning a desk in a office cubicle. I have had my ribs and my hips to slightly pop out of place rolling over in bed and my hips have done that with just walking around the house or going up and down stairs in my house. I have very sensitive skin that tears at the drop of a hat 🧢, and I get Atrophic scars if I get cut on something, or if my skin pops open and begins to heal. I bruise mysteriously out of nowhere ( I am also Epileptic and I know it is not due to a seizure, because my family usually tells me when that happens).
I’ve had over 20 surgeries and now I need more back/neck surgery now I give up on Las Vegas for finding any good doctors here I have to build a van to travel to go to Mayo Clinic I’ve been trying to go there for 10yrs been to Utah, Ca and Az so far I plan to land in Florida
it's always been wild to me how cleds isn't on the standard eds/connective tissue disorders genetic panels. like stephen said it's so hard to get any genetic testing, let alone for cleds. i know so little about how genetics works as a medical discipline but it seems like a huge oversight. i wonder how many people diagnosised with heds or hsd actually have cleds.
I'm sorry you had to deal with so many Doctors denying you. This happened to me as well and still does. I was waking up vomiting and passing out when I stood. 12 doctors in 8 years and none of them even ordered an endoscopy. They accused me of an eating disorder and mental illness. I had to degrade to the point of disability from dysautonomia and POTS before a doctor finally diagnosed me. I am still fighting for my pots diagnosis and after my last cardiologist said i didnt have it after not even doing the orthostatic correctly I get panic attacks before my appointments now :(
"Passing out when I stood" screams POTS. Heck, it boggles the mind a doctor can't figure that out. I tell my primary what tests or imaging I want. She knows I know much about EDS than her.
@@geraniaceae4470 yeah ty for sharing! My new neurologist confirmed pots with orthostatics and I have a tilt table coming up! Only took 8 years 😅
Dude thank you so much for sharing your story, this has been extremely helpful
Zebra strong famely 🦓👍Genetics sends my daughter and me the door, because people with EDS have a different look!? 😏 Thankful to have the EDS community in the Netherlands. Shout out to DR. Emile Janssen and all the specialist. Thank you Project Echo, thank you Ehler Danlos society 🦓
Me too ,I have a daughter has EDS ,were from Palestine
Yes we are a beautiful community 💕
Besides, being rare, it is invisible. I keep getting told how good I look 😆
I’d love to know more about EDS specific anesthesia. I’m newly diagnosed and my daughter had surgery a month or so ago- the anesthesiologist laughed at me when I asked if he could use ketamine for her- because I had read something about it helping reduce possibly causing fibromyalgia/hyperalgesia from surgical “trauma”. I didn’t know enough to argue. But I let it go because she’s only 12 and I chose to believe that the risks are mostly only after YEARS of chronic pain. As I type that I realize she’s been in pain since she was a toddler so 🤷🏼♀️ Anyways…. I’ve always had bad recovery from surgeries and a mixed experience with being anesthetized. Dentist numbing doesn’t work very well, twilight anesthesia seems to work REALLY well- being put all the way out seems to last longer in me than other people. And I have so much pain after every surgery.
I have the Classical type and I totally understand what he’s dealing with, the constant pain, the dislocation of joints, my right shoulder is the worst joint that seems to give me problems, I am a housekeeper at a bowling alley and I have dislocated my right shoulder just from cleaning a bowling alley table, I am also a janitor at another job and I did the same thing with cleaning a desk in a office cubicle. I have had my ribs and my hips to slightly pop out of place rolling over in bed and my hips have done that with just walking around the house or going up and down stairs in my house. I have very sensitive skin that tears at the drop of a hat 🧢, and I get Atrophic scars if I get cut on something, or if my skin pops open and begins to heal. I bruise mysteriously out of nowhere ( I am also Epileptic and I know it is not due to a seizure, because my family usually tells me when that happens).
Hello I’m also in Texas found I have a mutation in the gene that causes classical-like
I have both.
I would love to tell my story
I Would love to tell my story as well
I’ve had over 20 surgeries and now I need more back/neck surgery now I give up on Las Vegas for finding any good doctors here I have to build a van to travel to go to Mayo Clinic I’ve been trying to go there for 10yrs been to Utah, Ca and Az so far I plan to land in Florida
Hi Kayla, can you tell me who you saw in Arizona?
Ahhhh, doctor gaslighting, got to love that!
I would love to
Tell my story.