Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…
The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…
Welcome back to Editor's Choice! May is Lyme Disease Awareness Month, and to bring you awareness we have a 7-minute documentary you won't want to miss! We also have some…
Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…
Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…
It's hard enough to find love in this world. Apps, matchmaking websites, and nosy friends can do their best to lend a hand - but at the end of the…
What is it about twins that's so darn fascinating? We idolize them when they’re famous (ahem, Mary-Kate and Ashley), and we envy them when we’re young (I know I’m not…
The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…
The Cystinosis Research Foundation is the largest provider of grants for cystinosis research. When we say largest we don't mean in the country, we mean in the world. In fact,…
If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a high school senior waits by the…
On Thursday, March 30 – Saturday, April 1, 2017 at the Island Hotel, Newport Beach, California, members of the cystinosis community will gather to support their loved ones, suffering from…
Happy Friday Patient Worthians! Do you wish you can take a day off from your rare disease? What about when it seems like it's getting to be too much and…
I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Cuando la mamá de Hagan dice a los 12 meses de edad, muchacho irlandés que él es uno en un millón, no es broma - y que no es exactamente…
Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…
Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…
A 10-year-old boy in Colorado will be ringing in the new year with a new kidney, and his parents couldn't be more relieved. Marcus Root suffers from cystinosis, a rare…
On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.” She…
5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 a.m. Ella convenció despierto por sus padres y, a través de un…
Serendipity (n): la aparición y el desarrollo de los acontecimientos por casualidad en una manera feliz o beneficioso. Como muchos de ustedes probablemente saben, el viaje a un diagnóstico cistinosis…
It was a match made in heaven when the Homecoming King fell in love with the Homecoming Queen. Several years after they accepted their crowns, they got married and planned…
Cystinosis is a metabolic disease in which the amino acid cystine crystallizes and then begins to accumulate in the kidneys, eyes, liver, and white blood cells. Children are typically diagnosed…
This informative video describes in simple layman's terms what cystinosis is, how it affects the body, and how it can be treated. But the main idea I came away with…
If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
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