Has anyone been diagnosed with Ehler’s-Danlos Syndrome (EDS)?

Hello. You can get wonderful information on ehlersdanlosnews.com. It sounds as if you have hEDS, (hyperflexsable Ehlers Danlos syndrome). Two of the most concerning problems are with: 1. The eyes, in terms of dry eyes, fragile eye tissue, severe myopia, blue schlera, and retinal detachment. I do not have the myopia, but have had most of the other issues. I see an Opthamologist once a year. 2. The other issue is aortic issues and heart valve issues. I have tricuspid valve regurgitation and my sister has tricuspid valve regurgitation. All hEDS people need to undergo a Transthoracic Echocardiogram. You have to Google the list of conditions that go with hEDS and advocate for yourself to get diagnosed and get these tests done. For the heart Echocardiogram, I suggest you see a cardiologist who is familiar with hEDS, so they can know what to specifically look for. Other symptoms are chronic fatigue, arthralgia, exercise intolerance, anxiety, heart palpitations, neurocardiogenic syncope, chiari malformation, fertility problems, as well as others. These are just my set. I was damned all my life being called, lazy, overally sensitive, hypochondriac, old lady posture, skinny scarecrow. As a middle age woman I was finally diagnosed, because I went on Google and advocated for myself.

How are you diagnosed with EDS?

Check this place out. https://www.thesperoclinic.com/

EDS is one of their specialties. They offer an entirely different approach than conventional medicine.

@joelhoward1092 thank you-I will check it out.

@loyd1957 For me, it started 5 years ago with one of my successful knee replacements. They were fine for 10 years, we moved, and something triggered the gene. It is very hard to advocate for yourself because nobody believes the pain is that bad and all you can do is lie down. Finally, the second chronic pain doctor (MD) I saw diagnosed based on symptoms over the past 5 years! He put me on Naltrexone so I could do PT and get stronger. You absolutely have to have a counselor/licensed social worker to talk to. I keep a journal and always put my notes from doctors, pt, appointments. Find podcasts, websites, etc. for info. Bring it up in your GP appointment. Good luck.

@loyd1957 Also, I misspelled it: Danlos. Ehler’s-Danlos syndrom

@joelhoward1092 Have you been there?

I have. I only live about 70 miles from there and my son goes to the U of A.

If you want to direct message me with any questions, I will be happy to answer.

I turn 67 this summer and I've suspected EDS for several years but could never get a doctor to listen to me. This last year I've been tracking my symptoms in a diary. I've also noticed the same symptoms in my mom, 2 daughters, 6 granddaughters and a grandson. We all have hypermobile joints, digestive issues, muscle and joint pain and dislocations. One granddaughter has a diagnosis of POTS and MCAS but her doctor hasn't been able to put the EDS connection together yet. I fired my last doctor because he had never heard of Ehlers Danlos Syndrome. If he's never heard of it how can he diagnose and treat it. I see my new doctor in August. Supposedly she has experience with it so I guess I will find out. I've seen 5 gastroenterologists in the last 20 years. I had a bad fall in the military and had to have Sacroiliac joint stabilization surgery, cervical fusion of my c5-c6 and c6-c7 disc's. It seems like most doctors are incapable of figuring out that these separate problems are connected. Now I'm taking control of my health. Doctors work for us and we rely on them to help us deal with our health problems. . I'm glad you were able to get diagnosed. My mom is 85 and her ankles are always bruised from just walking. She has scoliosis and I was at the doctor with her when they found she has a heart murmur. I was diagnosed with Mitral Valve Prolapse at 20 years old. I started having problems at 14. Right now I'm writing all of my symptoms down from head to toe. I have small fiber neuropathy in my feet and can't walk very far, my hips click and have given out causing me to fall. Hives appear for no apparent reason. Hopefully this new doctor will listen to me and get me referred to a Rheumatologist. I'm a disabled Veteran and most doctors don't know how to submit a referral to a specialist. My last doctor failed 4 times. Every referral was denied because he didn't include in the referral my symptoms and the reason the referral was needed. Believe me I will be educating this new doctor on proper procedures. He wasted a year of my life. I won't let that happen again. We have to be stern advocates for ourselves and our family members who are also dealing with the same disease. With my diagnosis theirs will be easier since Ehlers-Danlos Syndrome is a genetic disease and can be inherited from a parent.

I am NOT a doctor but have some personal and family experience. I am sorry for all your issues, and they have been diagnosed in my granddaughter as well. But, I also have MCAS and was getting random hives, we thought as result of a medication. I went finally to an allergist who did the appropriate blood tests to check my issues, including a gene test for which I happily paid $169.00 b/c insurance and Medicare don’t cover it. I have been on a regimen of both #1 and #2 histamine blockers for over a year and have had no more attacks, even and most importantly when in hospital for a hip replacement and using a number of new meds. But any GOOD anesthesiologists know the protocol for pretreating and surgical drugs for MCAS and should interview you carefully. It should always be at the top of your medical charts, even for regular appointments, if it is not. Good luck to you. Hope you have found the right docs. People with other autoimmune diseases should be checked if they are having your combined issues.