PRAIRIEVILLE — It’s been a little over four decades of chronic pain for an Ascension Parish woman. Tiffany Reid, 43, has been struggling with a rare disease (only 1 in every 3 million people in the nation).
Primary Hyperoxaluria Type 1 (PH1), is a rare genetic disorder that affects the body’s ability to process oxalate, leading to an overproduction of kidney stones and severe health complications. Reid describes this it as “a life of nothing but pain and suffering.” It’s also why friends and family are hosting a benefit to help offset medical costs.
Early struggles & misdiagnoses
For Reid, the journey began at just 18 months old when she passed her first kidney stone. Over the years, her husband tells UWK that she faced many kidney stones, sometimes three to five a month.
“Her parents had brought her all over the U.S. to Emory University, UCLA, John Hopkins and all they would contribute to was, ‘Well, she needs to change her diet’,” Reid’s husband, Robert Reid, informs UWK.
She was told to avoid foods high in calcium and oxalates, but the changes did little to help her condition.
Discovery of PH1
Her pain was often dismissed, and she was left feeling misunderstood. It wasn’t until she reached 41 years old, after experiencing kidney failure, that a breakthrough came. A new nephrologist suggested genetic testing, revealing she had PH1, a rare disorder caused by a missing enzyme in the liver that normally helps process oxalate (natural compounds found in vegetables, fruits, nuts, and grains.)
Without this enzyme, oxalate accumulates in the body, forming crystals that can cause kidney stones, bone disease and even kidney failure. This explained her lifelong battle with frequent kidney stones and chronic pain.
Finding a specialist who understood her condition was a turning point. Dr. Kyle Wood, a specialist in PH1 at UAB in Birmingham, Alabama, provided the expertise she desperately needed. This rare diagnosis meant she was one of only a handful of patients with this condition, emphasizing the importance of specialized care.
Treatment & transplants
After discovering her condition, the focus began to shift to finding a more permanent solution and/or management process.
“She was on dialysis for three years and they were in the process of getting put on the transplant list. They were also putting her on a trial medication, supposed to help replace that enzyme that’s missing in her liver,” Reid tells UWK.
Reid also expressed how she felt about the news of the transplants, “I went into this so excited, because I had lived 43 years of a life of nothing but pain and suffering.”
“We were on the list for four days, the official list for four days when she got a liver and kidney transplant. Surgery went well, liver is working perfectly fine. Ever since then, we’ve been having issues with the kidney.”
The battle with the kidney is still an ongoing struggle. The constant pain and uncertainty, coupled with the mental strain of managing a chronic condition, have been overwhelming. She describes it as an emotional roller coaster, where moments of hope are often followed by setbacks.
“I feel blessed that I got a liver and a kidney, but then also, I feel horrible to feel like I’m sad because the kidney is not working as it should,” Reid says.
After the transplants took place Reid was actually cured and no longer has PH1, unfortunately though her body began to reject the new kidney. This causes future complications and more hardships for the family overall.
Going forward
Reid’s children have also been tested and carry the gene for PH1 recessively, but they do not exhibit symptoms. This knowledge allows them to make informed decisions about their health and future family planning, ensuring they can avoid the struggles she has faced.
To the people
Reid wishes this upon nobody and has made a statement about cherishing life itself.
“The days that you can wake up and get out of your bed, get in your car and drive to work, and have a drink after work with friends or be with people that you love. Overall, buy the shoes. Eat the cake. Take the trip.”
For the Reid family
A benefit is being put on to help support Tiffany Reid and her family. From 11 a.m. to 6 p.m. on August 17th, BBQ plates will be sold at Cajun Daiquiris for $8. That’s off of Highway 431 in St. Amant. All payment and donation options are available on the flyer.
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