My name is Gretchen Burnett, & I survived a rare spinal bone infection called Salmonella osteomyelitis. Less than 2% of people with spinal involvement survive it. It nearly took my…
As far as I can remember, I have always had an intolerance of heat and cold. I can remember at a young age not wanting to go outside in the…
For most of my life — starting when I was eight years old — I lived with a deep burning pain in my hands that felt like holding hot coals.…
My story began before I was old enough to understand it. Childhood cancer shaped my body and my life long before I had words for fear, pain, or survival. That…
Editor's Note: Patient Worthy is proud to share part 10 of 10 of Elena Genik's blog, detailing her journey with Graves disease and thyroid eye disease. Healing Is More Than…
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did we truly understand how fragile…
Editor's Note: Patient Worthy is honored to share part 9 of 10 of Elena Genik's blog documenting her experiences with Graves disease and thyroid eye disease. A Missing Piece in…
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary…
Editor's Note: Patient Worthy is pleased to share this article, submitted to us by George Simpson, who volunteers for the CMT Research Foundation. There are estimated to be between 6,000 and…
Editor's Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration and the end of treatment.…
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye disease. The Turning Point There…
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe for a baby. Ear infections,…
Editor's Note: Patient Worthy is proud to share part 7 of 10 of Elena Genik's blog series, detailing her experiences with Graves disease and thyroid eye disease. The Perfect Storm…
Editor's Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik's series of blog posts detailing her journey with Graves disease and thyroid eye disease. The…
Editor's Note: Patient Worthy is honored to share this article from our friends at Heal Canada, written by Karen Hawthorne. Anemia is one of the most common and serious complications…
Editor's Note: Patient Worthy is pleased to share part 5 of 10 in an ongoing series of blog posts, provided to us by Elena Genik. The Disconnect Between Numbers and…
Editor's Note: We're honored to share part 4 of 10 of an ongoing blog series, originally written by Elena Genik. When You Go to a Specialist Expecting Help There is…
Editor's Note: Patient Worthy is honored to share this patient story, provided to us by our friends at Heal Canada, and originally written for the National Post. James, 73, is…
Editor’s Note: Patient Worthy is honored to share part 3 in an ongoing 10-part series, written and shared with us by Elena Genik. When My Eyes Began Changing My TED…
Editor's Note: Patient Worthy is honored to share part 2 in an ongoing 10-part series, written and shared with us by Elena Genik. Before the Diagnosis For years, I felt…
Osteosarcoma is a diagnosis no family should ever have to face. It is the most common primary bone cancer in children and adolescents, yet treatment options have hardly changed in…
Twenty years is a long time to believe a cancer chapter has closed. For two decades after my radical prostatectomy, I lived with the quiet confidence of someone who had…
Editor's Note: Patient Worthy is honored to share part 1 in an ongoing 10-part series, written and shared with us by Elena Genik. When Everything Felt “Off” Looking back, I…
To the patient, the parent, the caregiver, and the person in the "limbo" of waiting: I am one of you. My name is Aaron Jackson, and this is my story.…
In the whirlwind of early motherhood, days blur together in a haze of feedings, diaper changes, and sleepless nights. You’re learning your baby’s every sound, every expression, and trying to…
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