News 11's Adonis Albright speaks with a local mom and lymphedema patient advocate to learn more about this rare disease
YUMA, Ariz. (KYMA, KECY) - Lita Trujillo's daughter, Aryanna, was diagnosed with primary lymphadema when she was a baby. It's a very rare disease that on average affects every one in 100,000 Americans. It can cause chronic swelling in different parts of the body, and can cause a multitude of health problems both in the short and long term. Trujillo, a member of the Lymphadema Advocacy Group in Arizona, is raising awareness about this condition.
“There needs to be more out there for these people, we need more in the community. Lymphadema is so in the dark and it affects so many more people than anybody thinks", said Trujillo.
Her daughter, nicknamed "Ary" for short, is nine-years-old. She developed primary lymphedema when she was in the womb, and the umbilical cord wrapped around her feet and legs up until the moment she was delivered. She's managed her diagnosis through the years with the help of various treatments, garments and toe caps. But the journey wasn't easy.
“We met with one doctor who sent us to another local doctor, who sent us to a vascular doctor, and after that we went through six doctors in Yuma.”
Trujillo says all of that changed when Yuma Regional Medical Center (YRMC) opened up its cancer clinic in Yuma.
“I want people to know that there are places out there, and it’s through the Cancer Center and Southwest Rehabilitation Center. I can honestly tell you that if it wasn’t for them, 99.9% of the stuff that we have been able to accomplish with her - we would’ve have gotten that."
To this day, her daughter is the only pediatric patient being treated at the clinic for her condition. Secondary lymphedema, as opposed to Trujillo's primary diagnosis, is typically found in older adults; whether it be from obesity or damage to lymph nodes in the body. Treatment for this condition can costs thousands upon thousands of dollars.
Trujillo and the Lymphedema Advocacy Group have been pushing for legislation to address the issue, and make insurance companies cover the cost of the countless and expensive necessary treatments to deal with the disease.
“We advocate for Arizona to get all our Senators on board, everybody to help get this bill to where it needs to be, to get passed in the House of Representatives, to get passed all over and then hit the insurance companies to make sure we will get the proper coverage needed."
She hopes the bill will give hope and relief to those afflicted with lymphedema, and wants to make sure other families don't have to go through the same experience that hers did. Although Trujillo is optimistic about the future of lymphedema treatments, it is a never ending battle for a disease that currently has no cure.
To find out more about the Lymphedema Advocacy Group and how you can get involved, click here.