It meant i could finally research more about whats going on with my body and how to manage it. It also led me to communities of people who go through the same thing. It helped my doctor help me. I could tell those around me what was going on and they could google it and learn my situation instead of confusion why i have invisible illness. It meant i felt validated and sane. It meant a lot to me. I cried when i found the answer.
I was also 50 when I was diagnosed. It was a relief to finally understand. Unfortunately, I have gotten no help from medical professionals here in the US. The nearest clinic that actually understands and treats hEDS is a 5 hour drive for me.
This is me. My whole life I’ve suffered. I now have hope that I can heal and feel better . I haven’t been formally diagnosed. I do not have good healthcare options. I’m going to do my best to get it under control with healthy naturopathic methods. Supplements, low histamine diet etc before taking any surgery or pharmaceuticals
It meant that I was able to get to the bottom of why I kept hurting and having my shoulder dislocation or my hip, and rib to do that when I rolled over in the bed, not to mention my hips popping out when I just walked in my house or up and down the stairs. I got answers to my problems. I have Classic EDS.
I'm 70, and recently found a rheumatologist that recognized my hEDS just with a few pages of medical history information (aka comorbidities) and my blue/grey sclera. I knew it wouldn't do much for me, but my daughter and grandkids were my main reasons. We all have very similar symptoms, so with my diagnosis, they can tell their doctors and ask about helpful assistive devices and therapy. All these years and generations of "bendy people" , and finally we have some answers!
I finally got people who belived in my pain except my parents My teachers thought I was lying especially my gym teacher who forced me to swim regardless of my joint pains Just.. Overall finally getting the diagnose and not need to explain my shit to everyone around me
*Cracks knuckles* time to write. As a baby, I didn’t show any signs of pain or issues regarding EDS. When I was 5 my teacher pointed out to my parents that i’d been limping a lot recently. Assuming i’d just hurt myself, they brushed it off. After 2 months, I was in so much pain I ended up in a wheelchair because I couldn’t walk. I didn’t understand what this sort of pain was and so I couldn’t explain it. When I was 6, after a lot of physical therapy I was able to walk again with the support of a walker. My parents were rejected by multiple doctors when they brought up this problem and were told I was either attention seeking or they were being dramatic. I was misdiagnosed with JIA and was given shots for almost a year which were causing me extreme illness and fatigue. My parents repeatedly told the doctors that they were wrong but they were shut down. Eventually my parents stopped giving me the shots and we moved to NZ when I was 8. My parents began studying every little symptom I had and came across EDS. I was taken to a specialist where I was then officially diagnosed. Getting diagnosed means a lot to me because it makes life easier for all the people involved in mine when they know what’s wrong with me and how to treat it.
I was so grateful for my diagnosis of EDS for a bit of peace of mind.. It's hard to explain, but when EDS was confirmed, I knew that there was 1 problem, instead of many different body system problems that seemed unconnected, it was due to one malfunction. Oh God... I hope this makes sense...
I have hEDS and I know * exactly* what you mean, and have told people around me the same thing. Maybe it’s something you can only truly get if you’ve been through it. Sending love 🦓♥️
@@Rain_Reign I think that you are correct. I have hEDS also and man am I in bad shape, I have some other issues as well, but the EDS makes it so much more difficult.
My GP asked why a diagnosis would be important for me because it will literally change nothing anyway. Upon stating it would be important for me I was referred to rheumatology who had rejected my referral.
What is the tool kit and how do you get it. They diagnosed me with a connective tissue disorder. And basically I’ve been having these issues but they’ve all come to a very extreme had in the past two years after I gave birth to my daughter. My blood pressure Has been a serious issue as well as now. I’m having a lot of severe neurological problems like white lesions on my brain. The only thing I know and can think why is because of the connective tissue disorder that nobody will investigate. My quality of life has drastically decreased in the past two years, and I’m constantly afraid that I’m going to die from a stroke or a heart attack. My care worker also is trying to find a geneticist that will just do the test. I have more than enough symptoms to qualify outside of hyper mobility. I was recently diagnosed with pot syndrome tachycardia, and the heart issues are now starting to affect my brain, as well as some issues that I’ve always dealt with like ASD, and ADHD, and never being able to really properly exercise. I am desperate for someone to help me, and I’m willing to go to any lengths to get help at this point, but it feels like there is no help.
It meant i could finally research more about whats going on with my body and how to manage it. It also led me to communities of people who go through the same thing. It helped my doctor help me. I could tell those around me what was going on and they could google it and learn my situation instead of confusion why i have invisible illness. It meant i felt validated and sane. It meant a lot to me. I cried when i found the answer.
I was also 50 when I was diagnosed. It was a relief to finally understand. Unfortunately, I have gotten no help from medical professionals here in the US. The nearest clinic that actually understands and treats hEDS is a 5 hour drive for me.
This is me. My whole life I’ve suffered. I now have hope that I can heal and feel better . I haven’t been formally diagnosed. I do not have good healthcare options. I’m going to do my best to get it under control with healthy naturopathic methods. Supplements, low histamine diet etc before taking any surgery or pharmaceuticals
It meant that I was able to get to the bottom of why I kept hurting and having my shoulder dislocation or my hip, and rib to do that when I rolled over in the bed, not to mention my hips popping out when I just walked in my house or up and down the stairs. I got answers to my problems. I have Classic EDS.
I'm 70, and recently found a rheumatologist that recognized my hEDS just with a few pages of medical history information (aka comorbidities) and my blue/grey sclera. I knew it wouldn't do much for me, but my daughter and grandkids were my main reasons. We all have very similar symptoms, so with my diagnosis, they can tell their doctors and ask about helpful assistive devices and therapy.
All these years and generations of "bendy people" , and finally we have some answers!
I finally got people who belived in my pain except my parents
My teachers thought I was lying especially my gym teacher who forced me to swim regardless of my joint pains
Just.. Overall finally getting the diagnose and not need to explain my shit to everyone around me
*Cracks knuckles* time to write.
As a baby, I didn’t show any signs of pain or issues regarding EDS. When I was 5 my teacher pointed out to my parents that i’d been limping a lot recently. Assuming i’d just hurt myself, they brushed it off. After 2 months, I was in so much pain I ended up in a wheelchair because I couldn’t walk. I didn’t understand what this sort of pain was and so I couldn’t explain it. When I was 6, after a lot of physical therapy I was able to walk again with the support of a walker. My parents were rejected by multiple doctors when they brought up this problem and were told I was either attention seeking or they were being dramatic. I was misdiagnosed with JIA and was given shots for almost a year which were causing me extreme illness and fatigue. My parents repeatedly told the doctors that they were wrong but they were shut down. Eventually my parents stopped giving me the shots and we moved to NZ when I was 8. My parents began studying every little symptom I had and came across EDS. I was taken to a specialist where I was then officially diagnosed.
Getting diagnosed means a lot to me because it makes life easier for all the people involved in mine when they know what’s wrong with me and how to treat it.
I'm 43 and have the exact same story
I was so grateful for my diagnosis of EDS for a bit of peace of mind.. It's hard to explain, but when EDS was confirmed, I knew that there was 1 problem, instead of many different body system problems that seemed unconnected, it was due to one malfunction. Oh God... I hope this makes sense...
I have hEDS and I know * exactly* what you mean, and have told people around me the same thing. Maybe it’s something you can only truly get if you’ve been through it. Sending love 🦓♥️
@@Rain_Reign I think that you are correct. I have hEDS also and man am I in bad shape, I have some other issues as well, but the EDS makes it so much more difficult.
Perfect sense. Actually, very well said.
My GP asked why a diagnosis would be important for me because it will literally change nothing anyway. Upon stating it would be important for me I was referred to rheumatology who had rejected my referral.
What is the tool kit and how do you get it. They diagnosed me with a connective tissue disorder. And basically I’ve been having these issues but they’ve all come to a very extreme had in the past two years after I gave birth to my daughter. My blood pressure Has been a serious issue as well as now. I’m having a lot of severe neurological problems like white lesions on my brain. The only thing I know and can think why is because of the connective tissue disorder that nobody will investigate. My quality of life has drastically decreased in the past two years, and I’m constantly afraid that I’m going to die from a stroke or a heart attack. My care worker also is trying to find a geneticist that will just do the test. I have more than enough symptoms to qualify outside of hyper mobility. I was recently diagnosed with pot syndrome tachycardia, and the heart issues are now starting to affect my brain, as well as some issues that I’ve always dealt with like ASD, and ADHD, and never being able to really properly exercise. I am desperate for someone to help me, and I’m willing to go to any lengths to get help at this point, but it feels like there is no help.