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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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    • Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
    • Patient Insights on Telehealth: A Case Study
    • Hearing is Believing: Reducing Barriers to Amplify the Patient Voice

Helping patients and caregivers share their voices

Weekly Warrior: Meet Tayler

April 19, 2022 Laura Mullen

“Hi, I’m Tayler @tmrandazzo24. I’m 22 years old and I’m a blood cancer survivor among many other things🦋!! So for starters, I was diagnosed with Attention-Deficit Disorder (ADD) at the age of 8. And I’ve been on medication ever since which has helped me tremendously over the years! Fast forward, 3 years later I was diagnosed with Growth Hormone Deficiency (GHD), where I was put on Growth Hormone Therapy in the form of daily shots until I hit 5 feet tall.

When I turned 15, I was diagnosed with Idiopathic Scoliosis. And at the age of 16, I had developed two severe curves on my spine (measuring 69 and 50 degrees), and it got to the point where I needed spinal fusion surgery to fix it. 5 years later, about two weeks after turning 21, I was diagnosed with Non-Hodgkin’s Lymphoma on 12/11/20. 💚 Primary Mediastinal B-Cell Lymphoma to be exact, which is a sub type of Diffuse Large B-Cell Lymphoma. As a result, I endured 6 cycles of Dose-adjusted R-EPOCH chemotherapy. From that point on, the next 6 months were beyond rough. I lost all my hair, had many scans and procedures done, and experienced horrible side effects along the way. But above all, I never let it get to me. On 4/2/21 I completed my last chemo cycle and got to ring the bell. On 2/18/22 I reached “complete remission” from my cancer after 434 days of fighting, wahoo! Currently, I am 1 year post chemo and I am doing considerably well considering all I have been through with virtually no long term side effects!

Finally, I love RPV because it allows me to feel heard, while at the same time getting to learn about all the amazing warriors out there.”

Filed Under: Patient

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