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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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 [...]
Christina Davis
Christina Davis I am 61 years old. I have suffered with Cystinuria since I was about 9yrs. Although I was not diagnosed until I was 17. When I was taking my college physical I was told what I had. [...]
Helen’s Story
Helen's Story Helen Guerra, a 20-year-old resident of Miami, has lived more than half of her young life diagnosed with a rare kidney disease called cystinuria. She led a fulfilling childhood filled with a love for reading, dancing, [...]
Sierra Gibbs
Sierra Gibbs Sierra Gibbs is a sophomore at California State University, Long Beach. Her life may seem like everybody else’s around her, but her story is not. At 13, while growing up in Colfax, CA, she was diagnosed with [...]
Michael’s Story
A Patient's Story: Michael Eckstut (New Jersey) Skillman resident Michael Eckstut, 69, enjoys a full and rewarding life in his roles as a husband, a father to three grown children, and a successful executive at a pharmaceutical services company. [...]
Leah’s Story
Leah's Story - Life with Cystinuria Leah, a 42-year-old resident of Montgomery, Michigan, has struggled with kidney problems from the incredibly young age of 2. Her journey of uncovering the truth behind these medical issues would take 40 years [...]