A personal account highlights the struggles of living with multiple rare diseases, including Hashimoto’s disease, rheumatoid arthritis, fibromyalgia, and postural orthostatic tachycardia syndrome (POTS). The individual faces significant medical costs and challenges in obtaining disability support, emphasizing the need for greater awareness and advocacy for those with complex health conditions.
I was diagnosed at the age of 12, after years of ER visits, being considered disabled at the age of 15, and after 15 years… Continue reading Surviving Medical Neglect About 2 months later I was diagnosed with another immune disorder (Hashimoto’s disease), Rheumatoid arthritis, Fibromyalgia, 4 bulging disks, degenerative disc disease, Ehlers-Danlos hypermobility, more determination to my C spine, and uncontrollable Postural Orthostatic Tachycardia Syndrome (POTS). I get IV meds every 6 weeks that cost $2,000 each infusion, nerve pain every day, 16 different medications every month, but I’m not disabled enough for disability. My quality of life is horrible. I have lost my hope of ever getting all of my disorders/diseases under control.
Original title: “Surviving Medical Neglect - Rare Disease Day 2026”