Personal Stories From People With Cystinuria2023-09-22T11:05:41-07:00

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, 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.


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