According to a story from edinburghnews.com, mother Karen Gray is about to seek access to cannabidiol oil for her five-year-old son, Murray, who has a rare type of epilepsy, Myoclonic Astatic…
According to a story from cbc.ca, Michelle Boich, 33, was facing the prospect of blindness if she is unable to get access to a crucial procedure that could treat her…
According to a story from the US News, Teresa Tostenrud-Hoff, a woman from Kansas, was only 22 years old when she was first diagnosed with primary sclerosing cholangitis. Since then,…
According to a story from philly.com, a pair of twins, Marilyn and Sharon Alexander, have dedicated much of their lives to cancer advocacy after a life and death battle nearly…
According to a story from tapinto.net, the Merrill family was crushed upon learning that their five-year-old daughter Leila was born with Sanfilippo syndrome, a lysosomal storage disease that ultimately causes…
Eva Shea wondered about her daughter. Mimi went to preschool like most children, and seemed otherwise healthy. She had, however, a peculiar, chronic cough. It sounded as though Mimi smoked…
A man in France has been the first person to ever receive two face transplants, reports the BBC. After Jérôme Hamon’s first transplant was rejected he underwent a second transplant…
Doctors told Samantha Youakim she had hepatocellular carcinoma when she was 10 years old. As a result of this rare form of liver cancer, the experts told her she’d only…
Have you read part one of Loukisha's story? Check it out here! When I imagined life with my husband and children my plans didn’t include surgeries, walkers, canes, a wheelchair,…
From birth until my mid-thirties I was a very active person. I loved dancing West Coast Swing, doing yoga, and cooking large meals for my ‘Ohana. The word "'Ohana" describes…
10-year-old Shayleigh Davidson visited her sister in the hospital a lot during the last five years. Her sister, Anai, is five years old, diagnosed with spina bifida and hydrocephalus. Spending…
For many, being diagnosed with any disease – let alone a rare disease – is understandably devastating. Many have described managing their new lives as learning a new language or…
The 2018 Mrs. Maine International Pageant will be so much more than a celebration of poise and beauty. It will also make history when Devan Demmons will proudly walk on…
Women’s* biology and symptoms are often misunderstood in medicine, which leads to difficulties in diagnosis and treatment. Maya Dunsenbery, a journalist suffering from rheumatoid arthritis (RA), recently wrote a book,…
A young woman in Cambridgeshire received a trailblazing double lung transplant. Now she’s started a Kickstarter campaign to publish a book to help other people in similar situations, their friends…
According to a story from stv.tv, 14-year-old Kira Noble has been fighting against neuroblastoma for around over four years. She first began to realize that something was wrong when her…
According to a story from news.vanderbilt.edu, Charlotte Haffner has been working hard to advocating on behalf of amyloidosis patients. She recently underwent a heart transplant and stem cell transplant in…
A $5 million charitable donation from the Isabella Santos Foundation has been committed to the Atrium Health’s Levine Children’s Hospital, reports FinacialContent. It will be used to establish The Isabella…
According to a story from The Irish Times, Noreen O'Carroll can vividly remember when she first received the news that she had been diagnosed with idiopathic pulmonary fibrosis. It was…
As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is not strictly a religious sentimentality about…
Michael Conway, 51, was diagnosed with Adrenoleukodystrophy (ALD) two years ago. Since then, he has been raising awareness for the rare and potentially life-shortening condition. He wants to let people…
On April 8th in Mystic Connecticut there was a special event. Over one hundred women, men, and children gathered in the Mystic ballroom to have their heads shaved! But why…
According to a story from wave3.com, time was running out for Leyan Albazzour, who is nine years old. Born in the Palestinian city of Ramallah, the treatment for her Apert…
According to a recent story from CityNews Toronto, Alara Ozkose's Dravet syndrome was preventing her from being able to live a life that was even close to normal. She was…
According to a story from the Independent, father Nick Sireau is worried that Brexit, the United Kingdom's plan to withdraw from the European Union, could affect the ability of his…
© 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.
