Donate to the
Rachel Dara Lavine
Amyloidosis Awareness Fund

Rachel Dara Lavine Amyloidosis Awareness Fund

Rachel Dara Lavine

June 21, 1976 - December 9, 2021

Rachel Dara Lavine, was a loving wife, mother of three, devoted daughter, sister, and friend. In her work as a physical therapist, Rachel was one of the heroes of the pandemic as a frontline worker, caring for the elderly in an assisted living facility.

She was only in her mid-40s when, in early 2021, she began showing symptoms of several different ailments. She led a very healthy lifestyle, ate a vegetarian diet, practiced yoga weekly, and enjoyed other physical activities, having been a gymnast in her youth. And so, when she became ill, it was—put simply—unfathomable.

The most prominent of Rachel’s health challenges began with stomach issues, nerve pain, insomnia, weight loss, fluid buildup, and eventually shortness of breath. After going to several doctors spanning months, she finally received an answer: Rachel was diagnosed with AL (Light-Chain) Cardiac Amyloidosis.

Rachel received this diagnosis in October of 2021. She passed in early December of that same year.

Amyloidosis is generally considered a rare disease, although improved detection may reveal that it is not as uncommon as previously thought. Typically, it occurs when an abnormal protein builds up in your organs and interferes with the normal function of these involved organs. It manifests predominantly in two forms– AL (Light-Chain), and ATTR (Transthyretin) Amyloidosis and it frequently affects many organs throughout the body. In Rachel's case, the amyloid proteins began to attack her heart.

One of the most challenging aspects of this disease is making a timely diagnosis. This disease is notorious for appearing in an insidious manner and the symptom presentation frequently differs for each individual. It is usually fatal if left untreated, so early identification, diagnosis, and treatment are absolutely critical for the best outcomes.

Today, there are multiple effective treatments to slow down or even shut off this protein malfunction issue. Unfortunately, the success of these treatments is best when the condition is uncovered early in the disease process. Exciting new therapies under development may actually break down and remove unwanted proteins from the damaged organs.

Our goal is to help doctors and other providers become more aware of this disease. Amyloidosis is not as rare as the medical community thinks. If each care provider becomes better educated on the early signs of Amyloidosis, patients will have a real fighting chance to prevent or improve their bodies before the organs are too far damaged.

As a patient- always listen to that little voice in your head. Follow your intuition. Ask for the extra tests if you feel the need. Don’t settle for answers that simply don’t feel right. We are our greatest advocates in the medical space. Ask the tough questions and push for answers.

A fund has been set up in Rachel’s memory, through the International Cardio-Oncology Society (IC-OS). Money raised through this initiative will be dedicated to raising awareness of the condition, educating medical professionals as well as patients and family support members, and encouraging multidisciplinary care by including primary care practitioners in the open dialogue about the disease manifestations and groundbreaking treatment available for both AL and ATTR Amyloidosis.