Genetics & Disease

Communicating with Your Family Can Save Lives
Genetics is a family matter, whether we like it or not.
What Are Your (Dis)Abilities?
I have gone cross-country skiing, kayaking and rowing. I have even been interviewed on television. I have done all these things . . . and I have a physical disability.
My Fight with Cancer
When Vinegar Burns
Chemotherapy . . . that was what cancer patients were treated with. “Is leukemia cancer?” I asked. The doctor nodded. I ran out of the room...
Finding G-d in Breast Cancer
Every conceivable kind of breast cancer was explained, as well as resources where I could obtain whatever I needed. I didn’t read any of it. It terrified me. I was numb, and felt that I had lost control of my life . . .
Elisa Ross
President of the Genetic Disease Foundation
Ten years ago this past March, my husband Jim and I lost our first born, Corey, to Neiman Pick (NP) Disease, a severe and currently incurable neurodegenerative disorder, at the young age of two and half...
Know Your Genes
The purpose of genetic testing is to allow for early detection, which in turn can lead to early intervention to prevent the onset of symptoms or minimize disease severity. Genetic testing has helped thousands prevent or prepare for hereditary diseases and make informed decisions about their healthcare...
Air Hugs
Fibromyalgia and the Power of Touch
I slumped in a stool, grading papers with happy face stickers because it hurt to write, and wearing headphones because the noise of the classroom sent painful shivers through my body. "Miss, can we hug you?" Reggie asked trembling, pushing his dreadlocks back from his face...
Scars and All
The Beauty of Survivorship
Ever since my mastectomy nearly two years ago, I have felt so ugly. Even following reconstructive surgery with a high quality implant I still feel… Disfigured. Unattractive. Only "normal" and "whole" will ever be beautiful to me...
A Mind Trapped
“Oh Debby,” she answers in delight, recognition sparking. “Please come in. I didn’t recognize you with these new glasses.” The lie stands between us. We both know she could not remember who I was...
Letter to My Organ Donor's Family
Please believe me when I tell you that, to me, your daughter is an angel. She is on my shoulders; she is like a butterfly in my garden. She is the most beautiful person I have never known, and I carry her within me. Every day...
Matchmaker, Matchmaker, Make Me a Match
When I found out I had been accepted into the Lung Transplant Program due to emphysema, one of the first things I did was re-write the lyrics to the song "Matchmaker"...
Destiny is a Peculiar Thing
I was put into a hospital gown and told I was being admitted. Why, why, why all the fuss, I kept asking myself? This all seems so over-dramatic. I need to get back to school and get my grades in...
Disability? What Disability?
Overcoming the Reality, Stigma and Pain
I awoke one morning at 5 o'clock to go to my nursing job. When I tried to stand up to go shower, I suddenly found myself on the floor in incredibly unbearable pain – all over!
Gaining More Than I Lost
My Choice to Have a Double Mastectomy
On my forty-ninth birthday last year, I decided that I would make the Mammogram appointment a month earlier than usual...
Not-So-Vital Statistics
How Much Do You Really Want to Know?
I didn't tell them about my other fear, the one that year after year keeps me from letting anyone perform genetic tests on me: The very real possibility that a doctor will peer into my innermost machinery and discover something wrong...
Breast Cancer Genetics and the Jewish Woman
An introduction to breast cancer and the risk for Jewish women of Ashkenazi descent.
Personal Accounts Regarding Genetic Testing
There are various choices and decisions that must be made for a woman who has been diagnosed with breast cancer. Here are three different women and their stories.
Ovarian Cancer Q & A
An overview of the most basic and important questions regarding ovarian cancer and answered by a leading gynecologic oncologist
The Gift of Giving
In Memory of Stephanie Jurnovoy Palmieri
I can remember visiting her in the hospital immediately following her surgery. We just stared at each other thinking how bizarre the whole situation was. It was surreal, and we both felt like it was happening to someone else...
Being Diagnosed with Diabetes
A Blessing in Disguise
Last year my world was turned upside down. It was an ordinary Sunday morning except for the fact that I had an appointment with my doctor to go over the results of the yearly blood work I had done a couple of days earlier...
The Diagnosis and how it Changed My Life
"I want you to come and see me. Make an appointment for next week. We will talk then. Goodbye." I felt cold inside; other worldly, trembly with fingers of relentless ice slipping like slime through all the arteries of my body. This was it; this is what I had dreaded for those three long weeks of waiting: one minute wanting them to be over and the next minute desperately trying to push off the 'knowing' date...