Cystic Fibrosis Cystic fibrosis (CF) is a rare condition that causes mucus to build up in the lungs and the digestive system. It results in chronic lung infections, lung inflammation, and…
According to a story from BBC, Mats Steen passed away at 25 years old due to complications from his Duchenne muscular dystrophy. Upon his death, parents Robert and Trude grieved…
According to a story from metro.co.uk, celebrity Katie Price, an English television personality, author, singer, and designer is reportedly considering part time residential care for her son Harvey. Harvey has…
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
According to a story from abc13.com, Makenna Brown, a four-year-old girl from Texas, has been plagued by relentless itching thanks to her Alagille syndrome, a rare genetic disorder. Her distressed…
According to a story from northjersey.com, Adam Levitz's life was hanging in the balance just a few weeks ago. His liver, which had endured years of damage from the rare…
According to a story from FOX31 Denver, Kelly Conley of Arvada, Colorado saw her circumstances change dramatically when she first began experiencing symptoms of Cogan's syndrome, a rare disease that…
According to a story from the Hindustan Times, seventeen year old Yash Galpelli was born with Wilson's disease, a rare genetic disorder. For a long time, he had no idea…
According to a story from wect.com, local singer Dustin Chapman of Whiteville, NC has been struggling for years against a rare disease called achalasia, which affects the esophagus. He recently…
Ehlers-Danlos Syndrome Ehlers-Danlos syndrome (EDS) refers to a group of rare disorders which affect the connective tissues in the blood vessels, bones, skin, and other organs in the body. It's caused…
Tristan Lederman's health started to take a turn at the beginning of 2017. Tristan lived at home with his family and depended on his family members and at-home caregivers…
One of my better friends within the cystinosis community is Mika Covington. We met at a cystinosis event in 2016. I had read some of Mika’s entries posted in her…
According to a story from the New York Times, a 50 year old Houston man had seen his health decline rapidly in a little over a year. After declining from…
According to a story from philly.com, it was August 2018 when Lisa Semple of Cherry Hill was first diagnosed with breast cancer. Unfortunately, her breast cancer had reached stage four,…
This is the story of Tom Dinwiddie, who was diagnosed with terminal cancer on April 2, 2012. This year, now age 69, he is officially six years cancer free. The Diagnosis…
According to a story from nbcwashington.com, Nikki Ferraro was diagnosed with a rare type of thyroid cancer when she was just seventeen years old. While she was able to survive…
According to a story from mirror.co.uk, a five-month-old girl named Maryam Malji was diagnosed with spinal muscular atrophy, a progressive, degenerative disease that is ultimately fatal without treatment. Her brother…
According to a story from the Tenterfield Star, a fundraiser was recently held for Tommy Johnston, a one year old boy who was diagnosed with the rare Niemann-Pick disease type…
According to a story from falmouthpacket.co.uk, couple Geoff and Judie Davis were devastated when their two year old boy Mikey died after being diagnosed with neuroblastoma. That was more than…
According to a story from wired.com, everything changed for Sonia Vallabh and her husband Eric Minikel after Sonia's mother died from a mysterious illness. Sonia's mother Kamni was in her…
According to a story from the Irish Mirror, 32-year-old Ben McGuire recently sued the HSE after claiming that the Cork University Hospital was unable to detect a pancreatic cancer tumor…
According to a story from the Derby Telegraph, four-year-old Audrina Hatton-Wright was diagnosed with a rare cancer called neuroblastoma about a year ago. This cancer mostly affects children. Doctors initially…
According to a story from the Philly Voice, it has been nearly nine years since Dr. David Fajgenbaum was first diagnosed with idiopathic multicentric Castleman disease. This immune system disorder…
According to a story from dailymail.co.uk, the story of Cayla Jones is an example of how a serious rare diagnosis can suddenly strike out of nowhere, often from symptoms that…
According to a story from dailymail.co.uk, 23 year old Ruby Hill of New Zealand was recently released from the hospital, but it wasn't because she had been successfully treated. It…
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