My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease (PVOD), a rare and complex…
Editor's Note: The following story was originally written and shared with us by Holly M. LaPrade. Thirty years ago, a small army of doctors cautiously presented me with a sheet…
Patient by Diagnosis. Founder by Decision. By Camden Hill, Founder & CEO of Areluno Health I was 20 years old when my body started quitting on me. At first, I…
All genetic testing we did for Jay during pregnancy came back normal (though we did the bare minimum). When he was born, he struggled to breathe and was diagnosed with…
So, Parkinson's Disease (PD) vs Functional Neurologic Disorder (FND) seem to join the other medical acronyms. What do these medical acronyms stand for? We have COPD for Chronic Obstructive Pulmonary…
My journey with inclusion body myositis (IBM) has taught me that even when life takes an unexpected turn, hope, faith, determination, and the support of others can make an extraordinary…
Diagnosis and year of diagnosis I was diagnosed with epilepsy in 2000, and I have been living with epilepsy for more than 26 years. My journey has included countless seizures,…
Editor's Note: Patient Worthy is honored to share this story from our friends at Elephants & Tea. Originally written by Mellory Torres, a survivor of acute lymphocytic leukemia, the article…
My name is Kelli Frederick, M.A., and I have lived with neurofibromatosis for my entire life. I have also undergone more than 50 facial surgeries. When you live with a…
Editor's Note: Patient Worthy is honored to share this patient story, submitted to us by Shelly Glenn. For most of my career, I worked on the other side of cancer.…
There are parts of 2024 that I know only through photographs and the stories my sister has told me. In some of the pictures, I am lying in a hospital…
Editor's Note: Patient Worthy is pleased to share this story, submitted to us by Connie B. What if one diagnosis could change the way an entire family understands its past,…
My name is A. Sabesan. I am 25 years old, living in Chennai, Tamil Nadu, India. Up until the age of 18, my life was completely ordinary. But at 19,…
Editor's Note: The following story was submitted to us by Pam Mason, Patient Speaker & Advocate. If you looked at a picture of me, you probably wouldn't see someone who…
I’ve survived Stage 4 colon cancer for about 10 years. I went to the doctor for a routine colonoscopy. They said I had a long colon, and they could get…
When I was seven, my parents were trying to understand why I was becoming ill. I spent time in hospitals and underwent painful muscle biopsies. Doctors knew I had a…
Editor's Note: Patient Worthy is honored to share the following story from our friends at Elephants & Tea, originally written by Michelle Lawrence, a patient living with Chronic Lymphocytic Leukemia…
Editor's Note: Patient Worthy is proud to share the following story from our friends at Elephants & Tea, originally written by Dillon Groover, a brain cancer survivor. To see the…
Editor's Note: Patient Worthy is honored to share this article from our friends at Rareative. To see the article in its original format, please click here. When Jen brought Callie…
I thought I wanted a second baby. My son was an adult, and despite having an adorable Frenchie, I was ready to take steps to get to the baby smell.…
15 years ago I released my first PKU project. I never imagined the day would come when I would need to assert my boundaries this firmly. As I write this,…
For most of my life, I knew something was wrong with my body. I just never had a name for it. When I was around 18, I had what I…
For World CML Day (September 22nd), Nancie Steinberg reflects on living with chronic myeloid leukemia and how a cancer diagnosis ultimately led her from patient to advocate. Fourteen years ago,…
Editor's Note: Patient Worthy is honored to share this article from our friends at the Aplastic Anemia and MDS International Foundation. To see the article in its original format, please…
I want to share this to give some ideas I have found that help me move through difficult days with more steadiness and self compassion, especially when things are flaring…
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