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Does Anyone Have Ehlers Danlos Syndrome (hEDS) Too?

A MySpondylitisTeam Member asked a question πŸ’­
Connersville, IN
May 26, 2024
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A MySpondylitisTeam Member

@A MySpondylitisTeam Member. The closest our country has to free universal healthcare is the military healthcare system, TriCare, which is underwritten by Humana, the same underwriter for Medicaid. I often tell people to use their drs as access to tests and images, then make individual decisions based on the results of those tests. It's worth looking into. If non citizen spouses can get access to the free healthcare system in the military, because the same underwriter decides on coverage for both public systems, i would imagine she could get the MRIs she has to wait 3 years for in Ireland much sooner. And the reason for the MRIs i use is this - our drs refer patients to physical therapy prior to surgery. Yet they seldom send MRIs for the therapist to have clear knowledge of what they are treating. Serious injuries can result from great exercises yet inappropriate for certain spine and joint conditions. Next week im going for PT evaluation for my hip and neck that i recently had stem cell transplants for. I will definitely take the MRIs with reports so the Dr of PT can know which exercises and treatments are safe for me. Btw, Humana covers autologous bone marrow stem cell treatments for arthritic conditions if the spine, hips and lower. It's worth considering looking deeper into in lieu of spine surgery, which is rarely, if ever, helpful. πŸ˜ŒπŸ™

November 30, 2024
A MySpondylitisTeam Member

I do, yes, I am quite hypermobile. I have the hypermbobile type.

November 23, 2024
A MySpondylitisTeam Member

My mom has this along with CIDP. I have the symptoms but haven't bothered to pursue official diagnosis because I haven't read about anything that can be done about it other than what I already do for Psoriatic Spondylitis. I've learned that many precious days of my life can be wasted in doctors offices chasing diagnoses for all my discomforts when at the end of the day, the best treatments are all about diet and lifestyle. Good luck. πŸ˜ŒπŸ™

May 28, 2024
A MySpondylitisTeam Member

Hi @A MySpondylitisTeam Member. To be honest, we have not looked into that route. I'm not certain if Victoria would qualify for Medicaid as a foreign spouse, but I don't believe she would since it is a socialized healthcare system. I do know that I have to buy into the NHS annually when I get over to Ireland in 6 months time. It isn't likely that we would be taking plane trips at that point for medical treatment back here.

I do know that in my own personal journey I have had amazing access to imaging and treatments, however, that has resulted mostly in information rather than care with any level of efficacy. Whether dealing with private insurance, socialized healthcare, or any other options, I really do not believe the medical community properly understands how to treat spondy appropriately. The computer age seems to make us humans think we are far more advanced than we really are. 🀣

November 30, 2024 (edited)
A MySpondylitisTeam Member

@A MySpondylitisTeam Member. After living in Australia for a few years, I became keenly aware of the challenge we all face in having universal health care, the years of waiting like your Victoria is now going through to see a specialist. Aside from self curing, have you two considered bringing Victoria to the US for faster Healthcare? I believe we are heading down the same path that our brethren countries overseas are currently drowning in, too many patients searching for immediate health resolution from too few drs. But we are still able to get imaging and tests in less than a year. I have Phillipino friend who didn't have to get US residency to be on her husband's health insurance and was able to get tested and treatment for thyroid cancer. Yours in better health, PπŸ˜ŠπŸ™

November 30, 2024

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