Personal Stories From People with Cystinuria
Ever had a kidney stone,
or know someone who has?
If so, you may understand the excruciating pain associated with them. Men and women alike, often describe the experience as the worst and most intense pain of their life. Imagine having multiple kidney stones per week or month. This is the life of a Cystinuric.
Cystinuria is a rare genetic disorder that causes frequent, often daily, kidney stone formation. With no cure, those affected face a lifetime of painful stones, frequent hospital visits, surgeries, and high medical costs. Treatment options are limited, but protections under the Affordable Care Act prevent insurance discrimination for preexisting conditions like Cystinuria.
Unlike common calcium oxalate stones, cystine stones can form overnight and often require surgical removal. Because the condition is rare—affecting about 1 in 10,000 people in the U.S.—patients frequently have to explain their condition to medical staff.
Cystinuria is caused by a genetic defect that prevents proper absorption of cystine, leading to high levels in the urine where it crystalizes into stones. It affects people of all genders, races, and ages.
Cystinuria Awareness Day aims to increase public understanding, support research, and advocate for better treatments for those living with this debilitating disease.
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Cystinuria Awareness Day in Dixie!
Cystinuria Awareness Day in Dixie! Holly C Hey! My name is Holly, and I am 41 years old, and am from Hanceville, AL. , about an hour north of Birmingham. I was diagnosed with Cystinuria at the age [...]
My story and I’m still alive to tell it
My story and I’m still alive to tell it Brenda I had my first kidney stone when I was 17. I was at a slumber party, passed out, and woke up the next morning in terrible pain. They [...]
Over 300 surgeries
Over 300 surgeries Steven C I had my first cystine stone when I was 8 years old I am now 38 years old and I still have Cystinuria Stones I do take medication to try to help stop [...]
Tired of the Struggle
Tired of the Struggle Fj.T.O hola soy enfermo de cistinura desde que tenia 9 meses actuañmente tengo 34 años me han intervenido muchas veces por varios procedimientos como percutaneas ,uterescopia ,litotricia ect.. y todo para que después en [...]
Asymptomatic?
Asymptomatic? Lindah I am now 58 and I live in Australia. It wasn't until I passed my first kidney stone when I was 22 that I was diagnosed with Cystinuria. Since then I have had multiple surgeries, from [...]
I had my first kidney stone when I was 18
I had my first kidney stone when I was 18. Hi my name is Becca! I am 29 years old and I had my first kidney stone when I was 18. It required a lithotripsy and from then [...]
Living life to the fullest despite having Cystinuria
Living life to the fullest despite having Cystinuria If you hear Sophie Popham talk about Cystinuria, you might not think kidney stones are all that painful. Not because kidney stones don’t cause excruciating pain, but because the outgoing, energetic [...]
Living with Cystinuria for 44 years, and I’m one of the lucky ones
Living with Cystinuria for 44 years, and I'm one of the lucky ones Bruce Weisberg has lived with Cystinuria for 44 years, and he says he is one of the lucky ones. Although he has undergone four surgeries, with [...]
Living with cystinuria
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 [...]
Meet Three Siblings Fighting Cystinuria
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 [...]
I was told I would likely need surgery every 6 – 12 months
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 [...]
My journey with Cystinuria has been a rocky road to say the least (pun intended).
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. [...]
Happy to have been a “Guinea Pig”
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 [...]
I think I have have passed enough stones to pebble-crete a driveway!
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 [...]
We can beat this
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 [...]
George… “You need to start a foundation”
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 [...]
Leslie Whitney
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 [...]
You can’t be a pilot and a Cystinuric ;(
You can't be a pilot and a Cystinuric ;( Alvin Landrum lives in Carrollton, a small town nearly 40 miles west of Atlanta, Georgia. At 55, he sees a handful of physicians and specialists on a regularly basis, from [...]
My cystinuria and me.
My cystinuria and me. Hello, I am Nathalie, Venezuelan, married, 40 years old and clinical psychologist. My medical history began in 2004, at the age of 23 years with the following symptoms when I woke up one morning, I [...]
Strength and Perseverance
Strength and perseverance NOTE: this is an update to their original story HERE Strength and perseverance are the two words I’ve used in describing any individual with Cystinuria…. and that means my 3 Bare Kids as well. I have [...]