I’m seeing that new doctors are being taught that EDS is “psychosomatic” which is terribly disheartening. I hope we can get the right training out there for doctors!
My son sent me a link one day to EDS. Seems my mother (deceased in 1970) had it, I have it, and at least two of my three sons fit the criteria. My kindergartner grandchild seems also to fit the profile. What link do you see with Celiac and this disease
The connective tissue is not being weakened by something we're not doing. It is genetic. We are born that way. I wore corrective shoes from the day I could walk. I had corrective surgery on both feet when I was 10. I don't think amino acid imbalance caused this,.
@@RyeOnHamFor some people it could be the Mast cells. HATS (Hereditary Alpha Tryptasemia Syndrome) is a genetic condition that causes elevated tryptase which is a Mast cell release chemical that can cause hypermobility. I have problems with connective tissue: hypermobility in shoulder, hips, knees, ankles, wrists and neck instability that contributes to neurological problems causing dizziness and central sleep apnea. My sibling has been diagnosed with hEDS (hypermobile type Ehlers Danlos), and my mom was diagnosed with Systemic Mastocytosis. Mast cell issues are common for people diagnosed with hEDS. It's thought to possibly being varying genes underlying hEDS.
@@RyeOnHamy statement is correct for me. 1. I have mast cell problems 2. I have elevated tryptase levels 3. Tryptase acts like meat tenderizer (it weakens tissues). Dr Theohardides has spoke at Ehlers Danlos annual meetings about Mast involvement in hEDS. 4. High levels of Tryptase can cause hypermobility in joints. I'm just opining on my experience and your experience is yours. Tryptase isn't an Amino Acid.
Thank you so very much for all your efforts and for sharing all this with us in this way. I was diagnosed at 57 years old after decades of issues and LOA from schools and work and many surgeries. I’m so encouraged that our next generations may have a smoother path in life due to your work. 🫶🏻🙏🏻
Have you done research on the potential benefits of L-glutamine supplementation combined with weight bearing exercises to strengthen connective tissue. L-glutamine is also good for G.I. tract cells combined with intermittent fasting to lessen inflammation of the GI tract.
Please stop with the, "Have you tried..." comments. Seriously, I've gotten HUNDREDS of these comments when I tell people about EDS. YES, by the way, I have tried, "[fill in the blank]" and it didn't work. There is no cure. There are no drugs. There are no surgeries. There are no treatments. You brace, treat the symptoms, have a few dozen surgeries (I've had two), and wait for the pain subside enough to move on to your next injury. ABSOLUTELY NOTHING improves the quality of your collagen. It's not our fault. We didn't bring this on ourselves. We aren't the way we are because we don't take enough f'ing L-glutamine, glucosamine, chondroitin, fish oil, vitamin D, vitamin C, Vegetarian, Vegan, fruit only, etc. All these suggestions might sound helpful, but they all assume that WE are not doing enough and it's somehow our fault. Yeah, some creatine was not what I needed to stop my hip from dislocating when I sat in the car a couple of weeks ago.
Amazing work well done! this is an amazing initiative that should be modeled worldwide for every disease
I’m seeing that new doctors are being taught that EDS is “psychosomatic” which is terribly disheartening. I hope we can get the right training out there for doctors!
Finding even one gene that accounts for some hEDS patients is still super helpful!
My son sent me a link one day to EDS. Seems my mother (deceased in 1970) had it, I have it, and at least two of my three sons fit the criteria. My kindergartner grandchild seems also to fit the profile. What link do you see with Celiac and this disease
Elevated tryptase and other mast cell mediators can weaken connective tissue.
The connective tissue is not being weakened by something we're not doing. It is genetic. We are born that way. I wore corrective shoes from the day I could walk. I had corrective surgery on both feet when I was 10. I don't think amino acid imbalance caused this,.
@@RyeOnHamFor some people it could be the Mast cells. HATS (Hereditary Alpha Tryptasemia Syndrome) is a genetic condition that causes elevated tryptase which is a Mast cell release chemical that can cause hypermobility. I have problems with connective tissue: hypermobility in shoulder, hips, knees, ankles, wrists and neck instability that contributes to neurological problems causing dizziness and central sleep apnea. My sibling has been diagnosed with hEDS (hypermobile type Ehlers Danlos), and my mom was diagnosed with Systemic Mastocytosis. Mast cell issues are common for people diagnosed with hEDS. It's thought to possibly being varying genes underlying hEDS.
@@RyeOnHamy statement is correct for me.
1. I have mast cell problems
2. I have elevated tryptase levels
3. Tryptase acts like meat tenderizer (it weakens tissues).
Dr Theohardides has spoke at Ehlers Danlos annual meetings about Mast involvement in hEDS.
4. High levels of Tryptase can cause hypermobility in joints.
I'm just opining on my experience and your experience is yours.
Tryptase isn't an Amino Acid.
Thank you so very much for all your efforts and for sharing all this with us in this way. I was diagnosed at 57 years old after decades of issues and LOA from schools and work and many surgeries. I’m so encouraged that our next generations may have a smoother path in life due to your work. 🫶🏻🙏🏻
Have you done research on the potential benefits of L-glutamine supplementation combined with weight bearing exercises to strengthen connective tissue.
L-glutamine is also good for G.I. tract cells combined with intermittent fasting to lessen inflammation of the GI tract.
Please stop with the, "Have you tried..." comments. Seriously, I've gotten HUNDREDS of these comments when I tell people about EDS. YES, by the way, I have tried, "[fill in the blank]" and it didn't work. There is no cure. There are no drugs. There are no surgeries. There are no treatments. You brace, treat the symptoms, have a few dozen surgeries (I've had two), and wait for the pain subside enough to move on to your next injury. ABSOLUTELY NOTHING improves the quality of your collagen. It's not our fault. We didn't bring this on ourselves. We aren't the way we are because we don't take enough f'ing L-glutamine, glucosamine, chondroitin, fish oil, vitamin D, vitamin C, Vegetarian, Vegan, fruit only, etc. All these suggestions might sound helpful, but they all assume that WE are not doing enough and it's somehow our fault. Yeah, some creatine was not what I needed to stop my hip from dislocating when I sat in the car a couple of weeks ago.
Yes very uncommon journey of being diagnosed so fast