A Dothan resident has succeeded in her effort to have Wednesday, June 24, recognized as Cystinuria Awareness Day in Alabama.
TinaMarie Smith was able to secure a proclamation from Gov. Kay Ivey and a legislative resolution, House Resolution 81, introduced by Rep. Paul W. Lee of Dothan and passed by the state House of Representatives, to officially recognize the awareness day.
In 2017, Smith was diagnosed with cystinuria, a rare, debilitating genetic disorder affecting about 1 in 10,000 people. Cystinuria is characterized by frequent and recurrent kidney stone formation. It equally affects men and women and is a lifelong, chronic condition.
“At age 18, I was told that I had a large number of crystals in my urine and should always consume large amounts of water,” Smith said. “Other than one stone that passed at 36 years old, I was healthy in regards to this disease until the fall of 2017, when I was diagnosed with cystinuria.
Even though I drink plenty of water and watch my diet, I still suffer frequent kidney stone attacks. Cystinuria stones have jagged edges and are very hard to pass, so I have had 26 surgeries and 30 CAT scans in the past 2½ years.”
Cystinuria does not have a cure. Treatment often focuses on drinking water, reducing salt and limiting foods that are high in methionine, such as red meat and white flaky fish. Medication can also help reduce the formation of cystine stones.
Raising awareness is important, Smith said, because the early diagnosis and treatment of cystinuria are critical. If not properly managed, cystinuria can worsen and become kidney failure, requiring dialysis or a kidney transplant.
“I have spent many hours talking with doctors, nurses, and health assistants. Many have no idea what cystinuria is and that it is a chronic condition due to a genetic problem and therefore different from typical kidney stones,” Smith said.
Smith is hopeful that research being conducted into cystinuria will lead to a cure.
More information about cystinuria can be found on the website of the National Organization for Rare Disorders at rarediseases.org/rare-diseases/cystinuria.
A copy of House Resolution 81 can be found at legiscan.com/AL/bill/HR81/2020.