Sep. 16, 2022
TOPIC: Patient Stories
Posted by Julie Ostroff
My life has been completely altered by rare diseases, specifically rare cancer. During my pregnancy with my 2nd child, I had stage IV sarcoma. Doctors were unable to tell me the effect it had on my baby or how long I had to live. I had so many unanswered questions.
Side effects from the treatment left me very ill. Being sick was new to me, as I had always been healthy. Years later, I became sick again and struggled to find the disease. Because of my stage IV cancer diagnosis, I had trouble finding doctors to treat me. The illness continued and other health issues grew. Due to the lack of diagnosis and treatment, my body began shutting down. I had to beg for my life for doctors to help. I found my voice to be my own advocate and fight for my life.
I’m still here and not letting rare cancer rob me of my happiness. I will no longer feel lost or helpless. Rare disease is lonely; rare disease is unknown; rare disease is expensive; rare disease is dangerous for those who go undiagnosed.
The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.