Living with cystinuria My name is Mandi Payne and I have been suffering from cystinura for 5 years. Throughout those years I have undergone around 20 surgeries and pain every single day. I want to share my story because education is one way to help find a cure. I have spent the almost all [...]
Meet Three Siblings Fighting Cystinuria Originally posted on Global Genes in 2012 Note: There is an update to this story HERE If you have ever had or known someone that had kidney stones, you may understand the excruciating pain associated with these monsters. The pain has been described as the worst, unbearable pain that you [...]
NOTE: This was a press release from DelveInsight. It looks like the main objective is to look at the potential for investing in companies that are associated with Cystinuria, but there is some great data here, so thought it was work posting. ====================== Cystinuria Market: Industry Analysis, Treatment, Pipeline Drugs and Key Companies By [...]
I was told I would likely need surgery every 6 - 12 months (Jen) I was diagnosed with Cystinuria at the age of 16 in my final year of high school. On diagnosis they had found that I had completely blocked off my left kidney and was turning septic, however after having surgery [...]
My journey with Cystinuria has been a rocky road to say the least (pun intended). I had my first kidney stone at 9 months of age when I was a baby and had my first surgery in Santiago, Chile. The stone was the size of an olive seed so you can imagine the type [...]
Cathie Ronda -Happy to be a “Guinea Pig” I am now 67 years of age. At a very young age I had multiple stones. Many forming in as little as a day. I have passed many stones, and had multiple full kidney surgeries . In my youth we didn’t have as many options [...]
I think I have have passed enough stones to pebble-crete a driveway! I have lived with cystinuria my entire life. Around age 2, I was misdiagnosed with cystenosis. At age 20 my blood pressure was through the roof and it was found that I had hundreds of tiny stones and a gigantic (larger [...]
We can beat this! I began my journey at 16 with 7 stones at once. For years they didn't know what the cause was until I was 20. It has progressively gotten worse. The doctors are still trying to find a medication to help me. I have had 73 stones and 15 operations. [...]
George... "You need to start a foundation" George Brown Hi, I am 81 and and I have had cystinuria for 60 years. I have been fortunate to have doctored with some of the best. My journey started at the National Institutes of Health on the protocal for D-penicillamine and later on Thiola. I [...]
Leslie Leslie Whitney has Cystinuria, a chronic disease characterized by the formation of kidney stones. She keeps pill holders in her car and her cellphone is loaded with apps that remind her to take her medications every day. It’s all part of many arrangements she has had to make to manage her condition. She [...]
