“I want my kidneys biopsied.”
In this powerful video, we hear about the journey to diagnosis from Linda, a daughter, mother and wife living with AL amyloidosis. After fifteen symptoms materialized over the course of just two years, Linda knew something wasn’t right. From severe back pain, sudden high blood pressure and uncontrollable vomiting, to 40-pound weight loss and “a new heart murmur,” Linda unfortunately had to step down from her career as a registered nurse. It took months to finally be diagnosed with AL amyloidosis, and Linda attributes the ultimate diagnosis to her own persistence.
“The hardest patients are doctors and nurses because we downplay a lot of the symptoms,” Linda notes. But after insisting that her GI doctor biopsy her kidneys (her kidney functions were not good), they finally had their answer – Linda had AL amyloidosis.
AL amyloidosis is a rare and progressive disease where plasma cells overproduce light chain proteins that misfold, aggregate and deposit as amyloid in vital organs such as the heart. Patients with AL amyloidosis can present with a wide range of symptoms that are common to other conditions, such as fatigue, shortness of breath or edema, making it very difficult to diagnose. AL amyloidosis can also lead to cardiac failure. You can read more about it here.
This October 26th, World Amyloidosis Day, we invite you to join us in celebrating patients like Linda for their unwavering strength and determination, and for inspiring others to be their own advocate.