June 24 is Cystinuria Awareness Day.
Together, we can raise awareness of Cystinuria throughout the entire month of June.
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, debilitating genetic disorder characterized by frequent and recurrent kidney stone formation. Those who suffer from Cystinuria can experience kidney stones as frequently as daily. Because there is no cure, a Cystinuric can expect a lifetime of producing kidney stones and dealing with the associated pain and expense.
People suffering from Cystinuria can have frequent hospital visits and surgeries to remove kidney stones or manage the pain related to kidney stones. There are very few options when it comes to therapeutic drugs to manage Cystinuria. Between the cost of surgery, and the drugs to control the disease, life as a Cystinuric can be extremely expensive. Fortunately, the Affordable Care Act protects those with cystinuria and other preexisting conditions from discrimination by health insurance companies.
Cystine stones form very quickly, sometimes overnight, unlike other calcium oxalate stones which can take years to form. The larger stones may require surgical interventions, but surgery is usually the last resort because of the sheer quantity of stones a Cystinuric produces each year.
In the US, Cystinuria affects approximately 1 in 10,000 people, so it’s not unusual for Cystinurics to have to explain their condition to medical staff. Cystinuria does not discriminate, and affects people of all genders, races, ethnicities, and ages.
Cystinuria is a genetic defect the impairs intestinal absorption and renal reabsorption of cystine. Cystine is then excreted at high levels through the kidneys and is insoluble (meaning not able to dissolve). In this environment the cystine crystalizes, forming stones and potentially causing damage to the kidneys.
Through Cystinuria Awareness Day, we hope to bring more awareness, research, and awareness to this debilitating disease.
Personal Stories of People Living with Cystinuria
If you would like to share your personal Story CLICK HERE
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 [...]
Stone Survior
#stonesurvior My name is Bee Salinas, I am 33 years old and I was diagnosed with cystinuria when I was 18 months old. I have been through countless procedures 25 to be exact. Growing up I didn't get the [...]
Ella-Louise Gilbert – UK
Ella-Louise Gilbert - UK Hi, my name is Ella! I am 22 years old and I live in the United Kingdom, but I was born and raised in Belgium. I was diagnosed with Cystinuria when I was just 5 [...]
How Can I be involved?
1. Get Social
Download out social media kit and show the world you support Cystinura Awareness Day.
Download the Social Media Kit Here
2. Share your story about what it’s like to live with Cystinuria.
Share your story and we’ll post it on the site. As we raise awareness of Cystinuria, its good to have real life stories of what it’s like living with this disease so people can understand Cystinuria and the impact on people lives and those around them.
Click Here to Share Your Story
3. Does your state currently
recognize “Cystinuria Awareness Day” ?
If you would like to help represent ICF, to have your state recognize Cystinuria Awareness Day, please contact us.
State Proclamation
Whats involved if I want to have my state recognize Cystinuria Awareness Day?
Michelle Gibbs was instrumental in getting the day officially recognized in California.
Here is how she describes how the process went for her.
Firstly, I would say, anyone interested should message Gayle Sweeney a the International Cystinuria Foundation. She has been coordinating these volunteer efforts for year, and knows which states already have either a proclamation or resolution for Cystinuria Awareness Day.
I jumped at the chance to make that happen in my state!
Since some states already have similar bills, Gayle had someone send me a sample of the language from another state, so I just needed to make a few changes here and there to fit my particular state. From there, it was a matter of contacting the right person in the state legislature to ask them to introduce the bill for me. I began this quest back in 2019. Each state has their own rules and deadlines on the process, so my initial request for a proclamation had to be changed to a request for a concurrent resolution.
My representative in the state Assembly agreed to introduce the bill, but he also happened to be running for a seat in the Senate that year, which delayed the resolution. At first, this was because he was in the middle of an election, and then when he won, he had to change his office and staff over to the Senate. With all these delays, we missed the deadline again, so I had to wait to contact him at the beginning of 2020. We all know how that year went! lol
After successfully introducing the bill, getting a unanimous vote to pass the bill (39-0) in the Senate, Covid hit and the resolution ended up “dying” because our legislature stopped meeting, and it was never heard in the Assembly.
With 2020 behind us, I took a chance and contacted my Senator again in January of this year to ask if he would re-introduce the bill. He agreed, and we just got our new bill number! I didn’t have to rewrite anything. The moral of this story is, “persistence is key.” I don’t think the process itself is hard. I also think it’s probably usually a lot faster!
– Michelle Gibbs