Anyone live in Maryland w EDS?

@mmmerrimac I certainly understand. I'm on Medicare too and Part D won't cover an osteoporosis medication that I like since it's not in the formulary, and the one it does cover is almost $500 per month. I realize there is a MOOP for prescription coverage but still.....I think there is a physician in the Denver area as well (can't recall her name) but see what PRISM says. If you explain your situation you never know. And reach out to MUSC in Charleston to find out the latest on its EDS clinic. There is a lab at MUSC made up of researchers who have EDS and they are looking for the hypermobility EDS gene. I don't know the latest. Our youngest son has EDS. I've wondered if I have had a variant of EDS because when I was younger my mother took me to a number of rheumatologists who couldn't figure out what was wrong with me in regards to my lower back and joint pain. Best of luck to you.

@ngk1 Thanks! I'll check out MUSC in Charleston too. I have difficulty standing and walking, so traveling is problematic for me, but I may have to do it to get answers.

I'm sorry you're unable to get the osteoporosis meds you want. I find that the problems with Medicare coverage so often are with the private insurance aspects of it, such as the Medicare Part D, Medigap, or Medicare Advantage policies. I have original Medicare A and B, but I accidentally lost my supplementary/Medigap coverage last fall (brain fog). By the time I realized it, I was past the grace period and couldn't get it reinstated without going through underwriting. With all my health problems, I can't get underwritten—period. Yep, pre-existing conditions are still a thing. I don't want to go with a Medicare Advantage plan (again, private insurance) because of limited access to specialists and need for prior approval. Because of some expensive tests (e.g., heart catheterization), my 20% copays are killing me.

@mmmerrimac I certainly understand. I'm on Medicare too and Part D won't cover an osteoporosis medication that I like since it's not in the formulary, and the one it does cover is almost $500 per month. I realize there is a MOOP for prescription coverage but still.....I think there is a physician in the Denver area as well (can't recall her name) but see what PRISM says. If you explain your situation you never know. And reach out to MUSC in Charleston to find out the latest on its EDS clinic. There is a lab at MUSC made up of researchers who have EDS and they are looking for the hypermobility EDS gene. I don't know the latest. Our youngest son has EDS. I've wondered if I have had a variant of EDS because when I was younger my mother took me to a number of rheumatologists who couldn't figure out what was wrong with me in regards to my lower back and joint pain. Best of luck to you.

Hi. I live in Florida and am looking into getting an appointment at the EDS clinic in Jacksonville. I don't have an official diagnosis yet, and understand that there is no definitive "test" to diagnose EDS. I had genetic testing done through Sequencing and have the genetic variant associated with hypermobile EDS. I've mentioned the condition to my dermatologist and she said she remembers reading "a paragraph" about it when in school, but she did have a friend that died from an aortic aneurysm; she had vascular EDS. It's a shame that there are not more doctors that are familiar with or treat this condition. I'm 57 years old and look and feel much older due to the joint pain, arthritis in my low back, and skin laxicity. I would love to have one specialist that treats all the conditions that are caused by EDS. Hopefully the EDS clinic at Mayo will be a good start. And I am more than willing to participate in clinical trials if it helps others in the future. Best of luck to you!!

@ngk1 Thanks! I'll check out MUSC in Charleston too. I have difficulty standing and walking, so traveling is problematic for me, but I may have to do it to get answers.

I'm sorry you're unable to get the osteoporosis meds you want. I find that the problems with Medicare coverage so often are with the private insurance aspects of it, such as the Medicare Part D, Medigap, or Medicare Advantage policies. I have original Medicare A and B, but I accidentally lost my supplementary/Medigap coverage last fall (brain fog). By the time I realized it, I was past the grace period and couldn't get it reinstated without going through underwriting. With all my health problems, I can't get underwritten—period. Yep, pre-existing conditions are still a thing. I don't want to go with a Medicare Advantage plan (again, private insurance) because of limited access to specialists and need for prior approval. Because of some expensive tests (e.g., heart catheterization), my 20% copays are killing me.

@ngk1
I've had Prolia rejected when coded as medication but covered when coded & submitted as medical treatment/in-office visit. Worth a try...?

@mmmerrimac so sorry to hear that. I went back to Evenity as it is covered by Medicare Part B since it is considered an infusion. Sorry to hear you lost your Medigap. That has to be so frustrating. I understand how it works with private insurance. I used to work in managed care on the hospital side. I think it was a surgeon or two who decided to create the clinic at MUSC but unfortunately I don't remember much else.

Clair Francomano, MD, was at Human Genetics, Johns Hopkins Human Genetics in Towson/Baltimore. She diagnosed me with EDS several years ago. She’s at the University of Indiana now. She may be able to advise you.
I would check out the Johns Hopkins Human Genetics clinic n Towson.
I feel your pain and frustration it took many, many years to get a diagnosis. Even now many doctors are skeptics until they get me in the surgery room and see how my shoulder and hip dislocate with just a little shove. Then they use me as a teaching tool!