ASCENSION PARISH, LA. (BRPROUD) — High school senior, Lauren Swanson, has been battling with a rare kidney disease for three years and is in need of a kidney.
The 17-year-old, Lauren Swanson, has been diagnosed with a rare kidney disease called Dense Deposit Disorder. According to Divita Kidney Care, the disease affects only two or three people in every million. Usually occurs in children and teenagers between the ages of five to 15 years old.
According to Lauren, she says, “it’s just I don’t know how to explain it,” when it comes to telling those about her condition.
Three years ago, during the height of COVID-19, Lauren’s mother, Toni Swanson, noticed some of Lauren’s physical features had changed. Noticing her eyes were ‘puffier’ than normal, and that her legs were swollen more than normal.
The family immediately started working with Our Lady of the Lake Children’s Hospital (OLOL). Lauren’s first biopsy, the doctors thought it was lupus. Later they discovered it was a rare autoimmune disease called Dense Deposit Disease, also known as DDD.
“It’s kind of a situation where we don’t have a choice, we didn’t ask for any of this,” says Toni Swanson. “We don’t want any of this.”
Dr. Ashley Rawson is a Pediatric nephrologist at the OLOL Children’s Hospital and has been working with Lauren for three years.
Dr. Rawson explains how “they don’t know, what triggered” this rare kidney for Lauren.
According to the National Center of Advancing for Translational Sciences, DDD may develop by genetics or environmental triggers.
“It’s basically these dense immune deposits,” says Dr. Rawson. “That line her kidney filters, and it’s just very difficult to treat.”
The biopsy, showed proteins were attacking her kidneys, which could lead to kidney failure in the next 10 years.
According to Lauren’s mom, the problem is that the disease has only been discovered within the last 15 years, and doctors are still learning what treatments work.
“We don’t know week to week,” says Swanson. “Until she does labs if we have a problem or not.”
Swanson says Lauren is very quiet and doesn’t say a lot when she is in the “medical world”, versus when she is around her family and friends.
For Lauren, all she cares about is feeling better enough to play softball during her senior year, at Ascension Christian School. However, whether or not she can play, is unknown at this time due to her conditions.
“Depends on how I feel and stuff,” says Lauren Swanson. “And what labs look like.”
Swanson created the Facebook Page, “Kidney of Kindness.” It’s a way to share Lauren’s story and meet others with the same disease.
The family has also created a GoFundMe page called “Lil bit of Love for Lauren”, in hopes of securing traveling funds for potential treatments.
The Page to Lauren means that it, “let me know that people love me” says Lauren. “And that they’re always behind me supporting me.”
To apply online to be a potential donor, click here.
Another option to learn more information on donating a kidney to Lauren, call the UIHIC Transplant Team, at 319-353-6624
Potential donors who qualify can reach Lauren’s mother Toni, at kidneyofkindness@gmail.com for help with completing the UIHC questionnaire. Recommendations to apply to the University of Iowa.
There is no out-of-pocket medical testing for the potential donor. Toni says their insurance policy and transplant location covers all medical cost.