How a LAM diagnosis changed a 17-year-old's life

Posted on April 28, 2022   |   
Author: Ronni Berke

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When spring arrives, most high school seniors are gearing up for graduation, prom, and going away to college. Not so for 17-year-old Adrianaliz, who was in the hospital, unable to breathe. When she found out she had LAM, her heart shattered. The teenager spent her last two months of high school with a chest tube, missing her birthday and other memorable moments, including the final days of her beloved grandmother.

Adrianaliz’s symptoms began when she was only fourteen, with sporadic, severe chest pain. But since LAM is a rare disease, it took years for doctors to recognize the signs and make an initial diagnosis. 

Her family was filled with fear and uncertainty. What was LAM? How could this happen to someone so young? Luckily, they got answers to those questions and more, by contacting The LAM Foundation. We helped ensure that Adrianaliz and her family had access to expert care and up-to-date resources. Soon, Adrianaliz will begin taking sirolimus, the only FDA-approved treatment for the disease.

She is one of the youngest LAM patients that pulmonary experts have ever seen – and will likely be on sirolimus for decades to come, to keep her disease in check. The safety and efficiency of long term sirolimus use to prevent LAM progression for such a prolonged period is not known. Nishant Gupta, The LAM Foundation’s Scientific Director, says that is precisely why we must continue to urgently seek remission-inducing treatment options for LAM. Along with typical teenage decisions surrounding her education, career, and where to go with friends, Adrianaliz must wrestle with such topics as future pregnancy and family planning. 

Adrianaliz is confident that because of The LAM Foundation’s commitment to research, there will eventually be a cure. Her aunt, Brenda Perez, echoes that feeling. “I truly believe the LAM Foundation’s work will lead to a cure because this organization stays connected with specialists and LAM patients who are in this battle against time.”

The tight knit LAM community has boosted Adrianaliz’s mental, as well as physical heath, and eased the isolation she felt after being diagnosed with such a rare disease. “I don’t know anyone else with this condition. The LAM Foundation does an amazing job helping people. They are all women. They literally help each other. It’s really satisfying to discover – you’re not alone.” After seeing other LAM patients with accomplished careers, she now wants to become a nurse anesthetist. Her goal: to eventually take care of LAM patients and be an inspiration to others.

Brenda says since her niece’s diagnosis, The LAM Foundation has been invaluable to her family. “For LAM patients, it is a constant struggle to stay strong and healthy, and at the same time stay informed on the latest treatments. We are very grateful to The LAM Foundation for their support and guidance from the very beginning of our fight against LAM.”

 



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