Yuma’s mother draws attention to her daughter’s primary diagnosis of lymphedema

News 11’s Adonis Albright speaks to a local maternal and lymphedema patient advocate to learn more about this rare disease

YUMA, Arizona (KYMA, KECY) – Lita Trujillo’s daughter, Aryanna, was diagnosed with primary lymphedema as a baby. It is a very rare disease that affects an average of every 100,000 Americans. It can lead to chronic swelling in different parts of the body and cause a variety of health problems in both the short and long term. Trujillo, a member of the Lymphadema Advocacy Group in Arizona, is raising awareness for this condition.

“There has to be more out there for these people, we need more in the community. Lymphadema is in the dark and affects so many more people than anyone thinks, ”said Trujillo.

Her daughter, called “Ary” for short, is nine years old. In the womb, she developed primary lymphedema and the umbilical cord wrapped around her feet and legs until delivery. She has managed her diagnosis over the years with the help of various treatments, pieces of clothing, and toe caps. But the journey wasn’t easy.

“We met with a doctor who sent us to another local doctor who sent us to a vascular doctor, and after that we went to six doctors in Yuma.”

That all changed when the Yuma Regional Medical Center (YRMC) opened its cancer clinic in Yuma, according to Trujillo.

“I want people to know that there are places out there through the Cancer Center and the Southwest Rehabilitation Center. I can honestly tell you, if it hadn’t been for her, we would have managed 99.9% of the things we could do with her. “

To date, her daughter is the only pediatric patient treated in the clinic for her condition. Secondary lymphedema, unlike Trujillo’s primary diagnosis, is typically found in older adults; be it from obesity or damage to lymph nodes in the body. Treating this condition can cost thousands and thousands of dollars.

Trujillo and the Lymphedema Advocacy Group are pushing for legislation to address the problem and get insurance companies to pay for the myriad and expensive treatments necessary to treat the disease.

“We advocate that Arizona get all of our senators on board, everyone who helps get this bill where it needs to be, that it gets passed in the House of Representatives, gets passed everywhere, and then meets the insurance companies to make sure that we will get the coverage we need. “

She hopes the law will bring hope and relief to those affected by lymphedema and wants to make sure other families don’t have to experience the same as hers. While Trujillo is optimistic about the future of lymphedema treatments, it is a never-ending battle over a disease for which there is currently no cure.

To learn more about the Lymphedema Advocacy Group and how you can get involved, click here.

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