According to a story from BBC, John Mason, age 80, is one of over 2,000 people in Wales who currently have idiopathic pulmonary fibrosis (IPF), a rare and ultimately lethal…
Susan Aumiller’s story begins with a dream. She and her husband, Bob, made it a goal to visit every national park in the United States. About halfway through the journey,…
According to a story from Bangor Daily News, Andrea Dole decided to have a home birth for James, her first child. With the support of her partner, Patrick, two midwives,…
The process of getting diagnosed with a rare disease, as well as living with one, can be a traumatic experience for patients. Many rare disorders or conditions may commonly cause…
The pop-punk singer Avril Lavigne has announced her return to music with a new album that she made while fighting chronic Lyme disease. In a letter to her fans, she…
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
Allison McElvin had a healthy pregnancy and all of her ultrasounds went well, so no one suspected anything about her little baby Cooper. Even when she had little Cooper…
Meet Ethan Ethan Faneran-Burley was diagnosed at two years old with Mucopolysaccharidosis type 6 (or MPS type 6). It's a progressive, degenerative, and ultimately fatal condition. Those with MPS type…
According to a story from the Irish Examiner, treatment with the recently approved drug patisiran helped a British surgeon named Carlos Heras-Palou save both his hands and his career. Patisiran…
According to a story from stuff.co.nz., Janelle Brunton-Rennie and Kurt Brunton were celebrating their third wedding anniversary this past January. Little did they know that the next day, their lives…
According to a story from Vector, a patient in an early experimental trial for a potential treatment for PTEN hamartoma tumor syndrome appears to be benefiting from the therapy. Ten…
According to a story from wect.com, when Beth Quinn received news of her diagnosis of ovarian cancer, she knew that it was only a matter of time before the disease…
According to a story from the Harborough Mail, Magnus, who is six years old, was diagnosed with neuroblastoma around Christmas last year. Unfortunately, the disease had already spread and was…
According to a story from The Daily Telegraph, Huon May was diagnosed with a serious case of stage 4 neuroblastoma when he was just ten weeks old. The cancer was…
According to a story from The Chicago Tribune, Darnesha Bankston, age 23, was rushed to the hospital just before Christmas last year with a bunch of severe, life threatening symptoms.…
According to a story from Shawnee Mission Post, the nonprofit organization RareKC is working to support people with rare diseases that are living the Kansas City area. When living with…
Another article previously published under "Featured Adult: Rebekah Palmer's Story" in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle in being the adult patient…
According to a story by The Health Pundit, one woman showed a bold new way to spread awareness for multiple sclerosis. Kate Langwine-Cooke filmed her experience of a seizure. The…
According to a story from Morningstar, Richard Rendina and his family are no strangers to the challenges and tragedy that can come with a cancer diagnosis. Bruce Redina, for example…
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
According to a story from uk.news.yahoo.com, Sammy Basso is 22 years old, and for him, it is a miracle. That is because Sammy is living with the rare genetic disorder…
TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried…
Despite my misfortune, I still live life to the fullest I can. At three years of age, I was diagnosed with a rare disease, which initially had little impact on…
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
According to a story from mirror.co.uk, Vanessa Riddle, who had the rare cancer neuroblastoma, recently died after defying her cancer for almost a decade. She passed on June 1st, with…
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