I usually blog about Jewish topics. But I have a young friend, may she grow to be very very old, whom you need to know about. She’s not Jewish but she lives her life according to our adage And whoever saves a life, it is considered as if he saved an entire world. She has actually saved many, many lives. She’s quite simply remarkable.
For a brief few moments this year Lisa was heartless! Not the best way to describe this best of people but, you see, this spring Lisa received a precious gift, a new heart. Without it she, and the amazing work she does, would not have survived. Now, with the new heart pumping away, she’s just indomitable.
Lisa had, before her new heart, a heart condition known as hypertrophic cardiomyopathy. It’s usually genetic and in Lisa’s family it caused the premature deaths of her grandfather, father, and most recently her beloved sister, a young woman in the prime of life. Lisa, herself, had a stroke at age 21, three weeks after she was married.
It’s an insidious illness. Many people learn they have it when they or a family member suffer a sudden cardiac arrest. Many cardiologists are largely unfamiliar with it. But when you hear of a basketball player collapsing and dying on the court, chances are quite good that he has hcm, hypertrophic cardiomyopathy. No one knows just how many people have this disease. Sometimes the symptoms are profound and disabling. Other times they are rather benign. There is not yet a cure. Best estimates are that between one in five hundred and one in two hundred and fifty have the disease, many without knowing they are affected, and that they can pass it on to their progeny.
The disease is color blind, appears in both males and females, and appears throughout the world. It can make itself known in early childhood, old age, or never.
In Lisa’s family the string of deaths and the severity of her own illness was energizing. She was not going to take this sitting down. So she rolled up her sleeves and founded an organization called HCMA the Hypertrophic Cardiomyopathy Association. This organization has become her life’s work. No one knows how many people Lisa has advised. No one knows how many lives she has saved.
I daresay Lisa knows as much about this disease as if she had gone to medical school. She counts leading doctors, throughout the world, as her friends. She has an enormous following. She has published a book in partnership with one of the world’s foremost medical experts in the field.
Lisa is on a lifesaving mission. She is working hard to memorialize her sister. She is working hard to maintain the health of her only child, a young woman who also has the disease. And she is working hard to make the world aware of the disease and the battle. And hopefully the victories.
Among the victories is a network of Centers of Excellence. These are hospitals designated to treat hcm, hospitals where experience with the illness leads to cutting edge treatments and accurate diagnoses. It is a small, but growing, network. Patients often travel great distances to be seen at a COE. Their doctors are like rock stars! Famous in their hcm community because, for many, answers that were hard to find, are suddenly there. Patients are no longer alone, battling an often fierce enemy. There are medical professionals out there committed to giving them back their lives.
All thanks to Lisa.
Do you want a Jewish link? Nice to know that Lisa got her new heart at the Newark Beth Israel Medical Center!
And now she’s back, organizing a huge conference with leading physicians and patients. Counseling. Speaking. Using the media to make the world aware of hcm. Go Lisa go.
Ad maya v esrim. To 120!