Ehlers Danlos Syndrome (EDS) & HSD, calling all types!

I totally agree. I have it and insisted on a biopsy to corroborate for myself and a new Dr that I had cells consistent w someone w EDS. ! It was good enough for the doctors and insurance. Prior to that which is more recent, I could show orthopedist early on all of the physical tests in which I could tick off every one of the symptoms. I always start with touching floor flat handed w knees locked. My sister can even touch her nose with her tongue!

Hello 👋🏻
I’m trying to connect with others that had been diagnosed with HSD. I’m having too much symptoms that kinda fall out of the ones expected for HSD. If you have HSD what was your symptoms and when did it started? How long took you to get the diagnosis? What should I be in the look out?

Thank you so much in advance for any feedback 🙏🏻 blessings of soon healing ❤️‍🩹

Rather than the gene tests for hypermobile joints, there is an X-RAY called
Digital motion X-ray, that can measure the joints that extend beyond normal.
The machine is usually in chiropractor offices, but the analysis is done by radiation MDs. My cervical joints were causing issues with blood flow to my brain and the DMX pinpointed Cervical 4 as the worst. My Regenerative Medicine MD tightened 4-7 and the blood flow issue stopped.

You asked about the bone biopsy. I had a major all out horrible attack of Mast Cell Activation Syndrome , common by 40% in EDS patients. It came on like an assault after each covid shot. It presents, in my case, as a horrible skin affliction on my face. I looked like someone had splashed acid on it. With each wrong item I ate I would get a new spot. I self diagnosed and had it confirmed by on line Dr who is a naturopath. I went to a dermatologist , who was somewhat horrified and out of her element on this, but took a skin and bone biopsy right into my chin bone. She was clearly out of her element and so I moved on to Beth O’Hara’s website which was a huge help. I have 3 separate female Dr’s sites thats I have used to walk me through Mast Cell which is debilitating and more common to EDS than anyone has emphasized. I am a trained counselor by trade and teacher before that, so I dig!…..There are a number of co-morbid conditions as you have learned, but this one doesn’t get enough emphasis. This Pandora’s Box once opened, is opened for good, and Life of eating and even drinking (not referring to alcohol which I do not drink)…..is a very new and specific to me, eating regimen to be taken very seriously, but can really reinforce healing and health! I was totally bedridden for months save wandering to the kitchen or bath, and the brain fog was intense. It required a lot of patient research for me to dig out and follow protocols. In the end, Ironically , I designed my own with the help of the Eat Right 4 Your Type book for my blood type. All of my swelling subsided, my face began to heal and is healed today totally unless I eat the wrong foods or spices. My EDS calmed right down as well and inflammation fell away. Stress of course acerbates everything so I am careful but life is stressful!…..and the last thing I want to add is the importance of treating the anxiety of EDS. So many do not realize that the anxiety is a root issue …GAD……in EDS and an active co morbid condition always present and gets worse as you age. My husband always says, if the house is burning he is running back for my Effexor!…….I get to be happy every day without anxiety eating me up. There is a genetic marker found about 4 years ago, for anxiety disorder. I didn’t have the test as I had to look no further than my family, and the Canadian side was already on it when my daughters therapist, actually, suggested it to me. I think so many EDS patients fall into depression because their root issue of anxiety was not managed, then are put on antidepressants when it should have been an anti anxiety drug all along. Both my adult children have been placed on it and finally thriving. It was the discovery made from. Robin Williams death and he handed himself over to research. He was Welsh as well as I am partly, and my mother is by half. She had every single thing he had including the final insult of PD with Lewy Body Dementia. And she had EDS but I have it much more. Am I rambling?…..so sorry…..but maybe it can help another! God Bless!…..

You asked about the bone biopsy. I had a major all out horrible attack of Mast Cell Activation Syndrome , common by 40% in EDS patients. It came on like an assault after each covid shot. It presents, in my case, as a horrible skin affliction on my face. I looked like someone had splashed acid on it. With each wrong item I ate I would get a new spot. I self diagnosed and had it confirmed by on line Dr who is a naturopath. I went to a dermatologist , who was somewhat horrified and out of her element on this, but took a skin and bone biopsy right into my chin bone. She was clearly out of her element and so I moved on to Beth O’Hara’s website which was a huge help. I have 3 separate female Dr’s sites thats I have used to walk me through Mast Cell which is debilitating and more common to EDS than anyone has emphasized. I am a trained counselor by trade and teacher before that, so I dig!…..There are a number of co-morbid conditions as you have learned, but this one doesn’t get enough emphasis. This Pandora’s Box once opened, is opened for good, and Life of eating and even drinking (not referring to alcohol which I do not drink)…..is a very new and specific to me, eating regimen to be taken very seriously, but can really reinforce healing and health! I was totally bedridden for months save wandering to the kitchen or bath, and the brain fog was intense. It required a lot of patient research for me to dig out and follow protocols. In the end, Ironically , I designed my own with the help of the Eat Right 4 Your Type book for my blood type. All of my swelling subsided, my face began to heal and is healed today totally unless I eat the wrong foods or spices. My EDS calmed right down as well and inflammation fell away. Stress of course acerbates everything so I am careful but life is stressful!…..and the last thing I want to add is the importance of treating the anxiety of EDS. So many do not realize that the anxiety is a root issue …GAD……in EDS and an active co morbid condition always present and gets worse as you age. My husband always says, if the house is burning he is running back for my Effexor!…….I get to be happy every day without anxiety eating me up. There is a genetic marker found about 4 years ago, for anxiety disorder. I didn’t have the test as I had to look no further than my family, and the Canadian side was already on it when my daughters therapist, actually, suggested it to me. I think so many EDS patients fall into depression because their root issue of anxiety was not managed, then are put on antidepressants when it should have been an anti anxiety drug all along. Both my adult children have been placed on it and finally thriving. It was the discovery made from. Robin Williams death and he handed himself over to research. He was Welsh as well as I am partly, and my mother is by half. She had every single thing he had including the final insult of PD with Lewy Body Dementia. And she had EDS but I have it much more. Am I rambling?…..so sorry…..but maybe it can help another! God Bless!…..