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RACHEL DARA LAVINE AMYLOIDOSIS AWARENESS FUND
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Rachel vocalized that she wanted to help save a life from her challenging experience.
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 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.
What is Amyloidosis?
Amyloidosis is a rare disease that occurs when an abnormal protein builds up in your organs and interferes with their normal function. It manifests itself in two forms– AL (Light-Chain), and ATTR (Transthyretin) Amyloidosis. In Rachel’s case, the amyloid proteins began to attack her heart.
Diagnosis
One of the most challenging aspects of this disease is getting a diagnosis. The disease does not always display the same way in each person. It can be fatal if left untreated, so early identification, diagnosis, and treatment are critical.
Today, there is a treatment to slow down or even shut off this protein malfunction issue- Unfortunately, there is not currently a treatment to break down and remove the unwanted protein from the damaged organs.
Awareness – Physicians and patients
Our goal is to help doctors become more aware of this disease. Amyloidosis is not as rare as the medical community thinks. If each specialist becomes better educated on the early signs of Amyloidosis, patients will have a better chance to fight 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.
How will the funds be used?
A fund has been set up in Rachel’s memory, through the IC-OS. Money raised through this initiative will be earmarked towards raising awareness and educating medical professionals, particularly general and nurse practitioners, as well as patients, about AL and ATTR Amyloidosis.
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