"Hi Kaitlyn, you were so kind and messaged me about my daughter. Your message went to spam so apologies for the delay in replying. You poor love i have just read what your dealing with and in comparison my daughter is very lucky. I do hope you are…"

"Hello Liz!  I have been suffering with symptoms of VEDS for most of my life but I also have hyper mobility and symptoms associated with HEDS for about the last decade or so. Has your 23 year old since gotten tested at all? Does she have any…"

"I had breathing issues and was tested and dx with "vocal cord spasm". Cold air makes me cough, swallowing tablets can be hard, and hard to not choke on food and drink sometimes. Also known as 'hyperventilation syndrome'"

"Also, be careful when taking bicarb!! At least two hours after taking any other medicine. Bicarb contains chemical compounds, hence it can help but also interact with other medication badly."

"Hi Janet. Try taking B1 and B2 histamine blockers I.e. Telfast and Ranitidine. I was taking up to 800mg telfast when I was in flare up. Also anxiety can cause your throat closing issues, jaw, depression etc. Think about your symptoms and I assume…"

"She will have 'Mitral Valve Prolapse ', most likely. Heart specialist, bladder issues are muscle related and obviously flexible connective tissue. Hip replacement if bones are damaged. Otherwise, muscle condition and BPC 157 for healing…"

"BPC 157 or Body Protecting Compound 157. You inject it twice a day into your injuries. It helps you heal, you only get it from a geneticist. I use it for 1 year now and I'm walking again (40 y/o male), not far but still walking. Do your…"

"Dismotality or poor digestion, sorry auto correct."

"I have EDS. Disloyalty I strongly believe is created by excess histamine from over active mast cells 'Mast Cell Disorder'. Telfast twice a day kids will change your daughter's life out of site. Then once the EDS flare up calms down,…"

"No and it starts when you are born. You need to try and work out what is causing the issues and stop her eating it. This will create other ongoing issues in her body if you don't."

"I don't know about a procedure. But have seen a picture of a hip brace in Dr Brad Tinkle's book on EDS & HMS. It looks like a band that wraps around the leg and hip to help hold it in place. Try to sleep on back with pillows under…"

"Know what you mean about rare. Our family now diagnosed as mitochondrial MYOPATHY. But we inherit it as a dominent pattern. NORD want to study our family as it is unusual. Diagnosed MM by skin biopsy."