According to a story from the St. Helens Star, Amanda Sackville-Wiggins was diagnosed with hepatocellular carcinoma, a rare type of liver cancer, just after her 21st birthday. The cancer was…
According to a story from the San Francisco Chronicle, Isabel Bueso's parents were told when she was born that she would not live more than seven years. However, she continued…
According to a story from Tablet Magazine, Emily Kramer-Golinkoff is a 33 year old woman who is living with cystic fibrosis, a rare disorder that primarily affects the lungs. Emily…
According to a story from sciencemag.org, Huntington's disease can often feel like a curse. That's how it felt for Michelle Dardengo as she watched the disease consume her father. At…
According to a story from kentlive.news, Lucy Frost of Tumbridge Wells is doing everything she can in an attempt to get the NHS to provide her son with the medication he…
No one likes to be judged. However, during the many years that I've been involved with rare diseases families, I've learned that some people are very quick to judge parents…
According to a story from Nevada Public Radio, in the early 1980s, Lisa Iezzoni was a medical student at Harvard University. Around that time she received a diagnosis of multiple…
According to a story from Newsweek, when 25 year old Rebecca Griffiths first knew that her son Reggie, now aged two, was diagnosed with Sanfilippo syndrome, she had to face…
According to a story from thesun.co.uk, Jade Baldwin, 35 had been dealing with mysterious itchiness for years before she sought medical attention for it. While her legs were itchy, there…
According to a story from the Newham Recorder, a three year old girl named Isla Caton's neuroblastoma has relapsed for the second time. Despite the bad news, her mother Nicola…
This article contains a summary of the first episode of Afflicted A new series on Netflix called Afflicted explores chronic illness. It follows seven people as they talk about their…
According to the Tampa Bay Times, Aaron McQ did not want to die. He knew, however, with his disease he would inevitably have to. The 50-year-old man from Seattle…
According to a story by The Japan Times, Masatane Muto relies on a power wheelchair to move around. He is hardly in control of his own body and requires help…
Sam Nicholson was a small child. His mother, Erica, did not find this surprising. Erica is only about five feet tall. She weighs about 100 pounds. She describes all of…
Erika Baker and her family have been dealing with the impact of adrenoleukodystrophy (ALD) for generations. The disease has impacted several of her family members, including her uncle, her cousins,…
According to a story reported by the New York Times, 5-year-old Garrett Matthias had already thought about what he wanted his funeral to be like. He didn't want it to…
A 64 year old woman recently passed away on May 11, 2018. Ellen Maud Bennett had been feeling unwell for years, and when seeking out medical treatment, her doctors did…
According to the Santa Cruz Sentinel, Josalyn Catarino is an 11-year-old who loves Disneyland, TV romance shows, the ocean, and getting her fingernails painted. This, of course, sounds like any…
According to a story from Deseret News, sarcoma patients at the Huntsman Cancer Institute are planting sunflowers as a way to spread awareness about sarcoma, a rare and aggressive form…
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
In January-March of 2015, I was the healthiest I’d ever been... or so I thought. I worked out, drank plenty of water, had a great lifestyle and meal plan. In…
Nitu is eleven years old. She lives in Shayestanagor in Habiganj (a region within Bangladesh). While most 11-year-old children are full of energy, Nitu must stay at home. Nitu lives…
According to a story from stuff.co.nz, a baby from Auckland has been diagnosed with two extremely rare disorders that only occur in one in every 10 million people. Her name…
According to a story from wday.com, Paisley Forsell was what you might call a bit of an adrenaline junkie. She likes to live a high energy, active lifestyle. She loves…
The award-winning actor Alan Alda has shared his diagnosis of Parkinson’s disease during an interview on the CBS This Morning show. The source video of the interview can be found here on…
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