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So far Cystinuria.org has created 48 blog entries.

Living with cystinuria

By |2022-08-05T09:44:18-07:00July 18th, 2022|

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 [...]

Current Cystinuria Data

By |2022-06-27T11:56:03-07:00June 27th, 2022|

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 [...]

My journey with Cystinuria has been a rocky road to say the least (pun intended).

By |2022-08-05T09:43:33-07:00June 24th, 2022|

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 [...]

I think I have have passed enough stones to pebble-crete a driveway!

By |2022-06-21T15:37:21-07:00June 21st, 2022|

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

By |2022-06-21T10:55:24-07:00June 21st, 2022|

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. [...]

Leslie Whitney

By |2022-06-14T11:28:30-07:00June 14th, 2022|

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 [...]

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