It's unacceptable that doctors are refusing to ensure timely diagnosis, treatment and management plans for patients with Ehlers-Danlos
Tasks for tomorrow: fax copies of referrals that experts tell me they didn't receive. Write a letter to the Health Ombudsman. Write a letter to the state and federal Health Ministers
I want to know what subtypes of EDS I have so I can treat them as adequately as possible. I want referrals to the necessary specialists
I want to know what's going on with my heart and with my veins, particularly my fingers. I want a consult with a specialist who understand hEDS dislocations, POTS and MCAS. And I don't want to have to argue this uphill all the way. This is fucking ridiculous
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