The system isn’t built for rare diseases
Diseases
Chronic Pain, Genetic Disease, Immune Disease, Mental Health, Migraine, Rare Disease
Issues and Challenges
Kyra has encountered: Access to Expert Providers, Medical Discrimination, Step-Therapy / Fail First
My Story
I have a rare autoinflammatory disease called TRAPS. I also have chronic heart failure among other heart issues, migraines, chronic pain, anxiety, and PTSD. To get to my primary diagnosis of TRAPS it took years of misdiagnosis and getting turned away by my medical providers. This meant 27 years of an untreated inflammatory disease wreaking havoc on my body including my heart.
This month is my two year dual pacemaker anniversary. I am 100% dependent on it. This past June my pacemaker was upgraded to a CRT-P due to heart failure.
My inflammatory disease has a single orphan-drug FDA-approved for it, which I struggle to get on time every month. The other medications approved for autoinflammatory conditions are also considered orphan drugs but since they are not FDA approved for my specific disease I jump through hoops sometimes, using manufacturer programs to receive them.
My inflammatory disease forced me to leave my career in chemistry and fight for two years to get disability. I am still unraveling and treating the damage that the misdiagnosis and being-turned-away has caused. But I'll keep fighting because this year was also my 3 year anniversary with my husband, 3 wonderful years with my step daughter, and of course more years with my corgis Watson and Alice.
My Motivation and Inspiration
I want to help others get the medications and care they need. If that means looking for patient assistance programs, grants, doctors, etc then so be it. I do not want anyone to have to experience what I went through to get to where I am.
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