Brittle cornea syndrome

[Lozza812]

I am diagnosed eds hypermobile and have 2 daughters, aged 30 and 26. Both also very hypermobile, but not diagnosed. My youngest has had hearing problems from birth which have always been put down to very small ear canals and glue ear. My second daughters has just been referred to opthalmology for suspected kerataconus. Putting these together it's starting to look like BCS... anyone have experience of this as I'm quite scared for them.

[Country4eva]

It causes the supporting tissues to weaken which will cause eye bulging. Hence EDS with no collagen support for the supporting tissue of the eye. There is several treatments but no cure hence eds again. I would highly suggest they get genetic testing to see if she has the level of eds that affects connective tissue of veins, arteries. In rare cases the cornea can become detached and in small cases the cornea could explode. I will be praying for her and the family. My mom had stage 4 eds and the vessel on left side of heart which carries blood to the head and left arm collapsed. They called it steal syndrome. Sometimes she would pass-out because when the left side of body was not getting enough blood flow it would try to pull blood from the right side. Her blood pressure in left arm would run like 45/30. Right arm would read 120/ 70. I have stage 3. My daughter and grand daughter are stage 2. My eds plays havoc on my intestines. I have had 14 bowel obstructions and 12 surgeries. My daughter has surgery planned on her right shoulder Monday for the 4th time. Then she has to have surgery on right knee due to a tumor like hard round bone which is surrounded by fluid and then whe she gets over those 2 she has to have hysterectomy due to so much pain. She says it feels like someone ripping her insides apart. She has lost her right bicep tendon. She reached for something and it snapped into. She had surgery to remove it. Torn rotater cuffs. My grand having surgery Friday to remove 6 baby teeth that never came through hence eds again. She has terrible leg cramps and her ribs move just as mine do. They also had to put her on co tinious birth control to stop her periods due to the pain hence eds again. They will probably have there stage number changed to 3 instead of two. Please encourage them to get tested so they k ow where they stand and learn what they should or should not do. My daughter and grands i.mune systems are shot hence eds again. My daughter has arthritis everywhere, tmj, and migrains. I cry myself to sleep at night over this dreadful disease. I'm on pain meds and bezo for pain and panic attacks. I found out last year my ventricle on left side is not closing right. I have take gabapentin due to nerve damage from top of my head to bottom of my feet. I pray God will heal everybody with eds. It's an awful thing cause no one knows much about it. If I have to go to er they give me a hard time cause they dont understand it. I have arthritis in both jaws, trigeminal neuralgia. My tongue is on fire all the time and I have spasms in my throat. Sorry for all the info. I just feel like we all should share info with each other so everybody can learn what could be going on. I wish you all well and hope everything goes well with you and your daughters. God Bless

[Lozza812 in reply to Country4eva]

Thank you. My blessings to your family too