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Talk Health History Campaign Public Service Announcement

Family Health History Guide

Hereditary Cancer – Importance of Family Health History

Patient Stories About Genetics & Precision Medicine Saving Lives

We live in a world where genetic testing exists. Do I still consider myself lucky? Absolutely. I am lucky to be alive. I am lucky to have an amazing family and group of friends who made these past twelve months much easier. I am lucky to the knowledge to take the steps necessary to drastically lower my risks of more cancer. I hope that others will talk to a genetic expert and their doctors about hereditary cancer testing. In fact, I believe that someday genetic testing could help us live in a cancer-free world.
Survivor – Tested Positive
Lots of people talk about personalized medicine. But to me, personalized medicine means that every patient is a person, not a statistic, and that’s what I think we all need. Each person needs something different because we each have a different genetic blueprint, and our treatment needs to address that blueprint, not just the disease itself. Looking at the genetics changes how the tumor is going to be treated. Over the past four years, I’ve seen how treating a specific patient and a specific tumor with a specific treatment has given hope and longevity to many of my friends with ovarian cancer.
Patient – Provider
Because I have been tested, anyone in my family also can be tested. Seven members have been tested so far. My two aunts both tested positive. Shortly after receiving their test results, they both had prophylactic total hysterectomies. Without this testing, they could have been victims of ovarian cancer, which has been called the silent killer. Knowing that my positive test results saved my aunts from this deadly cancer gives purpose to the suffering I went through during surgery and chemotherapy. I don’t think “why me?” Instead, I look back and say I’m glad it was me. I am proud to be the one who opened the door for the rest of my family to be tested. Several family members have benefited from the testing. One of my cousins tested positive and is now getting an annual colonoscopy and four others have tested negative.
Patient – Tested Positive
Someday, I will convince my two siblings and my son to be tested because I am convinced that knowledge is power. Knowing that I have an increased risk for cancer puts life into a different perspective. I am thankful that I am healthy. Every morning I wake up and think about how I am going to spend my energy for the day. I choose to use it to spread happiness, exercise to keep myself healthy and have fun with my family. Life is too precious to spend your energy on anger or negativity. It’s not just about knowing for yourself, it’s about keeping the next generation healthy and safe as well.
Patient – Tested Positive
“For me, I felt it was important to complete genetic testing because it gives me an idea of possible cancers to keep an eye out for. Having done the testing also provided me with an array of preventative screenings I can do to ensure that I’m on top of my health. Instead of making me scared of the possibility of developing other cancers, I left feeling empowered that now I have more people looking out for me and tools in place to monitor my health.
Patient – Tested Negative
“Ask, ask, ask! Ask for genetic counseling and ask if genetic testing is needed. If you are positive, ask for treatment recommendations. Being positive for a genetic mutation is not a death sentence but an opportunity. You have options: increased surveillance, chemo-prevention, and surgery. You can be proactive and beat cancer before it even starts.”
Patient – Tested Positive
“Finally, I very firmly believe in the value of research. The more people that get tested, the more information we have moving forward in treating others with breast and other types of cancer. We benefit everyone when we get tested.”
Patient – Tested Negative
“And finally, knowing that my 14-year-old son has a 50% chance of being positive, I have been completely open with him about the testing and screenings knowing that once he is an adult, he should also be tested. Otherwise, for now, am just going to eat healthy, get back in shape other than round :-), screen myself, and live every day as a blessing.”
Patient – Tested Positive
It has been a pleasure doing business with you. I came to your company with some skepticism and what I found with your company was the opposite of that perception. I have been greatly impressed with the integrity and the dedication you have shown to helping my family.
Ms. C
William Elder, Jr. was diagnosed with cystic fibrosis (CF) at the age of eight, when the life expectancy for CF patients was very low. Now at 27, Bill is alive thanks to Kalydeco, a treatment of a particular form for his cystic fibrosis and a remarkable drug that treats the underlying cause of his CF, rather than the symptoms.

At a congressional briefing in 2013, Bill told members of the U.S. Senate that just knowing that there were individuals who were researching his condition gave him hope and the strength to continue his treatments and work to be healthier every day. Bill described waking up in the middle of the night after taking his new treatment for the first time. “I sat on the floor of my room for a while slowly breathing in and out through my nose, and then I realized that was it. I had never been able to easily breathe out of my nose before. This was something profound,” he said. He recalls telling his parents, “For the first time in my life, I truly believe that I will live long enough to be a grandfather.”

William Elder Jr.
At age six, Emily Whitehead was the first pediatric patient to be treated with a new kind of cancer immunotherapy and was cancer free only 28 days later. “If you didn’t know what happened to her, and you saw her now, you would have no idea what she has been through,” says Emily’s Mom.
Emily Whitehead
Melanie Nix’s family has a history of breast cancer — a history that Melanie couldn’t escape when she tested positive for the BRCA gene mutations linked to breast cancer in 2008. After 16 rounds of chemotherapy and breast reconstruction surgery, she had to have both ovaries removed to further reduce risks of cancer in the future. But Melanie is now cancer free thanks to precision medicine.
Melanie Nix
Beatrice Rienhoff’s eyes were spaced wider than usual, her leg muscles were weak, and she couldn’t gain weight. Her father, a trained clinical geneticist, took notice and wanted to help. After six years, he and his team of scientific volunteers identified the cause of her condition. Today, Beatrice is living a full life.
Hugh and Beatrice Rienhoff
Six-time NBA Most Valuable Player, Kareem Abdul-Jabbar was diagnosed with a form of leukemia in 2008. Known to be lethal, leukemia is a cancer of the blood and bone marrow. It caused the basketball great to slow down, fall ill, and worry. A few years later, he credits precision medicine for helping him to be well today.
Kareem Abdul-Jabbar

Craziest Excuses For Not Talking To A Genetic Counselor

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