Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat her pain appropriately”. There were periods of time where she was actually screaming in pain in the hospital, and the nurses had no way to treat her because of the new laws regarding pain treatment.
I retired early from my job as a clinical trial manager in order to investigate the illness, get her treated appropriately, submit for disability and get her affordable health care. For months I was paying for all her expenses, including medical. There is no way that my daughter would have been able to pay her bills (especially healthcare), or navigate the disability system and insurance system in order to get the proper care she so desperately needed. I do not believe my daughter would have survived the last few years financially, mentally, or physically without me acting as her medical and financial advocate.
There is a critical need for education and better diagnosis of this illness. ER doctors and nurses need to stop thinking of EDS patients as people who are struggling with addiction, and begin to validate their illness and treat them as people who require immediate medical aid as well as compassion. They are not faking the pain; education is key to help diagnose and treat this horribly misunderstood disease effectively.
Article by Ann.
