Meet Liam, a 12-year-old patient at Shriners Children’s St. Louis, born with myelomeningocele, a severe form of spina bifida. This condition affects sensation in his legs, leaving him without feeling…
Written by Heather Shorten, Founder, Pompe Alliance On July 15th, 2015, I was diagnosed with Pompe disease after about 3 years of searching for a diagnosis. I know 3 years…
Mohammed was born with spina bifida, a condition in which part of the spine doesn’t develop properly, exposing sections of the spinal cord and nerves. Born in Syria while his…
Written by Bill Clark Part 1 - Our Journey from Fatty Liver to Liver Failure Becky's fight is our fight. That became my "rallying cry” early on when my wife…
Written by Lauren Williams On August 4, 2023, I contributed an article to Patient Worthy about how I transformed my mindset from “Why me?” to “Why not me?” following my…
Written by Vanessa O'Connell Hello, my name is Vanessa, and I am living with late onset Pompe disease, also known as glycogen storage disease type II and acid maltase deficiency.…
Written by Linda Shows Let me start with, I’m BLESSED even though I have Alzheimer’s disease (AD). I am a blessed wife, mother, daughter, sister, friend, dog mom, nurse and…
Written by Chuck Howe Nothing in life gives me greater joy than seeing my grandchildren be happy and thrive. You can imagine the heartbreak and fear I experienced when I…
Written by Yla Flores Have you ever experienced a seemingly small moment that ended up changing your life forever? Whether it’s turning left instead of right, going out one night…
Written by Kevin Alexander, Storyteller, Musician, PKU Advocate, Podcaster “I’m not trying to live a ‘normal’ life. Normal is overrated. I’m trying to live my life.” I had that…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder of Stork Genetics.…
This patient story was contributed by the Marfan Foundation. ### CONTENT WARNING: This patient story focuses on a detailed account of fatal childhood aortic dissection. It is shared to save…
Written by Jennifer, a patient living with WHIM syndrome. ### I’m in my sixties - but it wasn’t until a decade ago that I learned the name of the rare…
Written by Caleb Browning This story was originally published for MySkinMyStory.org, a website offering young people living with severe atopic dermatitis — also known as eczema — and other skin…
Written by Virág Hazai, an Ehlers-Danlos Syndrome patient advocate living in Hungary. ### My name is Virág, and I'm a university student with Ehlers-Danlos syndrome (EDS). I would love to…
This article was written by and shared with permission from Shannon Wieloch, MS. Shannon is a certified genetic counselor and patient advocate for the Aicardi-Goutiere Syndrome Advocacy Association and founder…
Patient Worthy is proud to announce its participation in Health Awareness' 2024 Q3 Rare Disease campaign. Health Awareness, which publishes healthcare news, information and personal insight stories for readers in…
Written by George Simpson Despite nagging inflation and economic uncertainty (which could include “Will my company make layoffs in the next year? or “Will my landlord up my rent again?”)…
After years of research an international team of scientists has unraveled the genetic makeup of 47 strains of known and potential Lyme disease-causing bacteria. The work paves the way toward…
By: Harsha K Rajasimha, Ph.D., Founder and CEO of Jeeva Clinical Trials Challenges Unique to Cell and Gene Therapies (CGTx) Clinical Trials Cell and gene therapies (CGTx) have emerged as…
By Alexis Rodriguez When I was 24 years old, what started as a terrible sinus infection took a turn I never could have expected. I woke up one morning with…
Written by Carol Trager Parents of a “rare” child constantly search for answers, for direction, for hope. They collect information and advice from a variety of sources, yet they must…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Mike Dobbyn “Life expectancy: Early to late teens.” It was March 20th, 2019, and I was reading my son’s obituary on my iPhone while sitting in the geneticist’s…
Written by Judith Hill, Communications and Events Director, National Alliance for Eye and Vision Research In a remarkable show of unity and commitment to eye health, the Alliance for Eye…
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