Introduction I am a 50-year-old woman from the UK who has been suffering with an undiagnosed condition for 11-years for which I am seeking a diagnosis and medical treatment. I…
A 15-year search for a diagnosis by Lilly Grossman and her parents ended in 2013. Lilly became the first person in the world to be diagnosed with ADCY5-related dyskinesia.…
The story of my disease journey will be very familiar to many patients around the world. I was born and raised in a third world country where quality medical care…
Praise Aki Amedal, a Nigerian living in the city of Oriade, has just completed his first book entitled The Biological Prisoner . . . Finding Hope in a Failing Body.…
According to a story from Biospace, in Palo Alto, AI company Emedgene plans to dive into helping the undiagnosed with their new rare disease initiative. The company will be paired…
1 in 10 people suffer from a rare disease, but when I talk about writing for Patient Worthy, it’s usually the first time people have had a conversation or really…
As originally reported in Mercer Island Reporter, Jill Hawkins's three births went smoothly. Her eldest reached expected milestones and began to walk and talk. Her daughter, born four years later,…
Not just anyone can cure their own illness. Understanding how to cure a rare disease is complex, as these illnesses often have unique and poorly understood characteristics. Treatment and diagnosis…
As originally reported in NBC News, Mitchel Herndon was witty, sporty, and very close with his siblings. At 19, he began to study as a freshman political science and theology…
As originally reported on NPR, Alex Yiu’s mom has a montage of her son's early years. As one watches the videos, you see something: him losing control. He begins to…
When you have a rare disease, you know that the way it effects your life goes far beyond the symptoms listed on WebMd. It riddles through plans for weekend, your…
According to a story from the Washington Post, Bob Schwartz is a walking, talking medical mystery. He lives with a strange and diverse array of difficult symptoms, and after being…
According to a story from Science Daily, a group of scientists from the Australian National University have managed to discovery a new genetically linked disease and have also pioneered a…
Show of hands - who has ever indulged in a little beauty pampering? A mani/pedi? A haircut? A shave? Sure, that was a trick question - who hasn’t?! And that’s…
He estado usando los sitios de citas por Internet durante los últimos once años. También he estado tratando con una enfermedad rara y sin diagnosticar durante los últimos cinco años…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
Okay, you guys, I got a boyfriend! I didn’t think it was possible. I mean, if you have at all been reading my posts through my site TheSickandtheDating.com, you know…
2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
This year’s holiday season was difficult. Allow me to explain by saying that it was great to be with my family after at least 20 years of not being in…
When Harry Met Chelsea I frequently refer to online dating as “shopping for men.” I have my list of attributes I’d like to find in a mate, and the men…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
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