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.