The story of Deb
I have developed adhesive arachnoiditis after having a tumor and an arachnoid cyst removed from my spinal cord, because they were compressing on the spinal cord and causing some Neuro deficits. The pain is constant and often unbearable. Opioid patches don’t work and I was informed by my doctor that this can lead to possible syringomyelia and paralysis. I pray they find a cure before I end up in a wheelchair and a cure for all the other rare diseases.
As a pulmonary nurse, I have taken care of patients with scleroderma, pulmonary fibrosis, sarcoidsis, pulmonary hypertension, cystic fibrosis to name a few rare diseases. They are all life threatening disease that need cures as well.