Many Twitter users were confused and concerned when Julie O'Mahony posted a picture of her mother's hand with two of the fingers white and completely drained of color. However, while…
Chiprez Ramirez describes her younger brother Francisco as her "little ray of sunshine." Talking to MSN, she said that his rare disease journey and strength are what motivate her to…
Jaxson Corcoran was born with tuberous sclerosis complex (TSC), a rare genetic disorder that is characterized by benign tumors forming throughout the body. Treating this condition has become a family…
According to a story from thehansindia.com, 47 year old Xaverine Mukabaranga of Rwanda, Africa, checked herself into Manipal Hospitals. She reported symptoms of persistent chest pain affected her left side.…
Solna Braude describes her brother’s struggle with neurological disorders in her interview with Cure PSP. Her brother, Laurence, was no stranger to the medical world. He was a surgeon, cornea…
William Frackrell’s desire to serve his country was born out of his years as a boy scout and his military career. Then, according to a FOX 13 exclusive with William’s…
True was diagnosed with congenital amegakaryocytic thrombocytopenia (CAMT) when she was just six months old. Now she desperately needs a bone marrow transplant to survive. Her mother, Anessa Haden, is…
According to a story from dailymail.co.uk, 59 year old Marcia Ferguson-Roa recently died only a few weeks after unusual symptoms, such as fatigue and ulcers on her head, began to…
Alarming details of Katy Grainger’s sepsis infection were covered in the April 2021 issue of Women’s Magazine. The interview took place over two years after Katy lost both feet and…
Sawyer Burch is a four-year-old boy from the Nashville, Tennessee area who was born with trifunctional protein deficiency, a rare disorder that takes the body's ability to utilize certain types…
One of six-year-old Jackson Garwood's favorite things to do is listen to his father sing. Some of his favorite numbers include 'Talk Tonight' by Oasis and Aqualung's 'Brighter Than The…
CNN Newsource ran a special report about five-year-old Emmett Monaco of Beaverton, Oregon who is fighting to stay alive, but his body is slowly failing him. Emmett was diagnosed with…
Three people in the state of Indiana live with Niemann-Pick disease type C (NPC), and Audrey Mischler is one of them according to WTHI-TV 10. She was diagnosed very recently,…
Steven Elvidge has been left confused, frustrated, and debilitated for the past three years due to a mystery illness. Various symptoms have left him unable to live independently, forcing him…
Connor Dobyn's parents recognized that their son was missing important developmental delays early on. They brought their concern to the doctor, where Connor was diagnosed with autism. For the next…
It takes courage to suspect that there is something wrong and doctors are misdiagnosing your symptoms. It takes courage to keep going back and politely but firmly asks for more…
Many rare disease patients face difficulty when it comes to diagnosis. In fact, it takes an average of five to seven years for them to finally receive the correct diagnosis.…
When I sat down with 38-year-old Adam Kemble for our interview, there was one point that he really drove home: “You have the opportunity to choose what you let define…
Caroline is the adorable three-year-old daughter of Kevin and Kelly Brennan Culver, and she was diagnosed with juvenile dermatomyositis (JDM) about a year ago. This means that she requires an…
Tanner McLeod has been searching for a stem cell donor for a long time. He was diagnosed with sideroblastic anemia at just six months old and has required a transplant…
George Mendoza has inspired others throughout his whole life. He has been an athlete, an author, a motivational speaker, and more. Born in 1955 in New York City, Mendoza has…
A person’s true feelings are often difficult to express during an interview. When asked a question by the interviewer there is no time to rehearse but only grasp at the…
Altogether, there are over 7,000 rare diseases. Worldwide, 1 in 20 people live with a rare disease. But the journey to diagnosis can sometimes be confusing or difficult. So when…
Living with a rare disease can be difficult and scary for some, especially during a global pandemic that has affected millions. This Nottingham father knows these feelings firsthand; he lives…
Being diagnosed with a rare disease can bring on various emotions; everybody's experience is unique to them. Some feel relieved to finally put a name to their symptoms; others are…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
