Sharing Your Genetic Information Could Save a Life

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No one likes to be the bearer of bad news, but if you have a genetic disease like Lynch Syndrome or other kinds of cancer, you can save the lives of your family members by letting them know and encouraging them to get tested. There are a variety of resources to help you do this, including sites like Kintalk.org and IHaveLynchSyndrome.org.

Kintalk, “an educational and family communication site for individuals and their families with hereditary cancer conditions,” is one example of the way technology is making it easier for families to talk about genetics. Funded in part by Silicon Valley businessman Thomas Weisel and run by a board of directors including Dr. Jonathan Terdiman, Kintalk helps families confidentially share information about hereditary cancers and keep up with screening opportunities. There’s also a forum where visitors can share information and support.

Then there’s IHaveLynchSyndrome.org, an educational and awareness organization created by Georgia Hurst, who has tested positive for Lynch Syndrome herself. That diagnosis—along with the death of her brother from cancer—has put Hurst on a mission to connect patients and healthcare professionals—especially genetic counselors. Using tweet chats, blog posts, podcasts, and more, Hurst’s organization gives sufferers and their families access to all the information they need to make informed decisions about their care.

The big question when it comes to this sort of thing is how much (if anything) you tell your family. On the one hand, your genetic information could very well save their lives; on the other hand, you might be scaring them unnecessarily.

In Hurst’s case, she decided to let her family know—with mixed results. A cousin got tested and came out negative. Other family members refused to get tested and, Hurst says, were angry that Hurst was “trying to scare them.”

It’s particularly tough if you want to let your children know. “Whether to tell children and when and how to tell them is one of the most common reasons people seek support in the process of genetic testing,” says Karen Hurley, a clinical psychologist who specializes in hereditary cancer risk.

This is particularly true when it comes to breast cancer.  Do you let your daughter know about her potential risk even she hasn’t reached puberty yet? Dr. Jill Stoller, a pediatrician who carries a BRCA mutation (which means she’s more likely to develop breast cancer) decided to tell her daughter Jenna. When Jenna was 18, she chose to get tested. “She told me that the stress of not knowing was worse than knowing,” Stoller said.

On the other hand, Massachusetts special ed teacher Ann Little decided not to tell her 13-year-old daughter when Ann learned she had the BRCA gene—though she did tell her older children. “It would be a huge, dark cloud hanging over her,” Little said about her decision.

It’s a tough choice to make—deciding whether or not to tell your family about a genetic predisposition for cancer. Definitely a downer. At the same time, though, by sharing information—particularly through an online option like Kintalk or IHaveLynchSyndrome.org—you give your family a fighting chance at early diagnosis and treatment. In this case, ignorance definitely isn’t bliss. 

Kintalk Gets Families Talking About Cancer

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Cancer can be a scary disease—and what’s worse, it can be really isolating for the people suffering from it and their families.

Enter Kintalk.

Kintalk, founded by the University of California San Francisco’s Department of Medicine, is more than just a resource for people with cancer: it’s a place where they can gather support and information about the genetic aspects of the disease, as well as getting up-to-date medical research and advice from doctors whose work focuses on cancer treatments. The site also offers information about screening and a secure location to store medical information so that families can connect and get a good understanding of genetic issues that could lead to cancer.

The biggest win for Kintalk, though, is that it offers a secure, easily accessible place where families can upload their genetic information and share it with each other. That means a better chance of earlier cancer detection where there’s a genetic predisposition.

Kintalk wouldn’t exist without generous donations like the one from Thom Weisel, a Silicon Valley businessman with a background in tech. Back in 2013, Weisel met with Kintalk Board Director and gastroenterologist Jonathan Terdiman, MD, about Terdiman’s vision for a centralized, online location for families to share genetic information that could help patients detect cancer earlier and more efficiently. Weisel was on board immediately.

“Although medicine is often notoriously bad at using technology to address problems,” Weisel observed, “this is clearly a great application of technology. What’s really neat is that it can be applied to lots of other areas. Whether it’s a certain type of cancer or some other medical issue, it puts an affinity group—members who share the same issues—in a secure environment, and allows them to talk to each other.”

The medical experts behind Kintalk include genetic counselors, gastroenterologists, oncologists, surgeons, and nurses, all of whom specialize in hereditary cancer syndromes.

Kintalk focuses on two main areas of cancer: hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (a genetic condition that often leads to colorectal or ovarian cancer). About 5-10% of breast cancer and 15% of ovarian cancers are believed to be hereditary, while about one in 370 people have Lynch syndrome. That’s why it’s so important for families with a history of these genetic mutations to communicate with each other and get tested early to nip cancer in the bud before it becomes potentially life threatening.

Kintalk allows families keep in touch with each other—and with others dealing with these issues—and get all the information and support they need to stay as healthy as possible.

The best part about all of this is that the tech behind Kintalk could easily be used to provide support and education around other medical scenarios as well, like Weisel suggested. By connecting fellow sufferers with professional support, Kintalk and any offshoot programs will keep people healthier and more in the know about their options.

Memorial Sloan Kettering Masterminds the Future of Patient-Focused Care

NYC's Memorial Sloan Kettering Cancer Center will open its outpatient surgery center in January.
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Nobody likes going to the hospital—especially when it’s for something big and scary, like cancer. Sanitary white walls, humming machinery, woozy patients and worried family members—no thanks! But one hospital is aiming to make your visit quicker, friendlier, and more comfortable even if you’re suffering from a serious illness.

The Memorial Sloan Kettering Cancer Center in Manhattan’s Upper East Side will open its $200 million new outpatient surgery center this January. With the latest technology, room for future innovations, and a gorgeous design by Perkins Eastman and ICRAVE, the Josie Robertson Surgery Center will completely redefine what it means to go to the hospital.

Thanks to an active board including Bill E Ford (General Atlantic), James Robinson (RRE Ventures LLC), and Charles Sawyers (The Column Group LLC), the new Surgery Center will not only look great; it will comfort both patients and their families, as well as making use of the cutting edge of healthcare technology (think robots in surgery and iPads available for patient use!).

One big technological win is that patients will receive plastic tracking badges as soon as they arrive. These badges will collect data about how much the patients can move around after surgery and how well they’re recovering. That’s good not just for the patient and their doctor, but also for useful insight into future patient needs.

As for patients’ families, they’ll have plenty of support as well, including mobile device charging stations and an Xbox nook for fitness activities in the waiting room. The building design, inspired by hotel lobbies and co-working spaces, will put them at ease during a stressful time.

And we’re talking serious surgery here—say, a double mastectomy and breast reconstruction—performed with state-of-the-art equipment and in a healthy, soothing environment that gets patients in and out within a day.

JRSC exists partly because Memorial Sloan Kettering’s main campus is running out of room. But it’s also meant to be a place where medical staff can innovate and really serve their patients face-to-face and in a personal way.

“There’s nothing else like this that I’ve ever heard of,” said Brett Simon, and anesthesiologist and the JRSC’s director. He also pointed out his team’s dedication to meaningful patient interaction and support: “While it might not be that hard, medically, to get someone out the door, having them emotionally and spiritually happy and feeling supported is really a big deal.”

The New York Genome Center Uses DNA Research to Develop Personalized Cancer Treatments

NYGC is at the forefront of research into the human genome, or the complete set of nucleic acid sequence encoded as DNA.
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The New York Genome Center (NYGC) is at the forefront of research into the human genome. Leaders in technology, science, and medicine form this consortium. Their goal is to combine genomic data and industrial innovation into treatments for people suffering from serious disease. Business leaders like NYGC Board of Directors member William Ford, CEO of General Atlantic, provide the insight and experience required to discover, build, and maintain productive partnerships.

Each human cell contains our genome. Composed of DNA, the genome contains instructions for making our bodies. Strands of DNA form chromosomes, found in the nucleus of each cell. Our genes are sections of DNA within our chromosomes and control traits like eye color and height. The human genome is made of 3.2 billion bases of DNA. Enough data to fill a stack of paperback books reaching 200 feet high.

Vast amount of scientific research into cancer is being conducted and published each year. “The real challenge before us is how to make sense of massive quantities of genetic data and translate that information into better treatments for patients,” said Robert Darnell, M.D., Ph.D., CEO, President and Scientific Director of the NYGC.

Traditionally an oncologist searching for a DNA-based treatment for a patient’s specific type of cancer would have to invest crushing amounts of time and money coordinating reams of data to find the right treatment. Luckily the clouds have parted and there is hope on the horizon. That hope is based on the cloud computing capacity of IBM Watson working in partnership with the NYGC’s data. “Applying the cognitive computing power of Watson is going to revolutionize genomics and accelerate the opportunity to improve outcomes for patients with deadly diseases by providing personalized treatment.”

The Human Genome Project (HGP) completed the mapping of the human genome n 2001. This data provides detailed information about the structure and organization of a complete set of human genes. "It's a shop manual, with an incredibly detailed blueprint for building every human cell. And it's a transformative textbook of medicine, with insights that will give health care providers immense new powers to treat, prevent and cure disease," said Francis Collins, director of the National Human Genome Research Institute.

For more information about the New York Genome Center and the innovative work it does, visit www.nygenome.org.

Why I Love Writing, and How You Can, Too

I love writing. From a very young age, I’ve enjoyed the simple practice of putting pen (or pencil) to paper and just letting my thoughts flow. The first time I can really remember writing was in third grade, when my teacher would put daily writing prompts up on the board for us to complete. They would usually be something like this (with my answers looking something like this):

“I opened the box, and inside I saw…” 
(a giant, hairy spider)

“My favorite thing is… because…”  
(my dog, Tequila because she likes to snuggle and loves me a lot)

“The door opened, and in walked…” 
(my dad. He just came home from a business trip and brought me a new necklace!)

We always started out the day with about ten minutes to complete our journal entries, and each week our teacher would collect and review our notebooks. This simple activity is something I now believe to be a genius idea. Not only did it promote creativity, but it also made writing an informal event that we all got used to. Plus, when she would review the notebooks, she’d gently correct grammar and spelling and always wrote comments at the end. She connected with us. When my dad came for back to school night, I got to write him a note, and he wrote me one back. It’s one of those memories I will always cherish. Oh, and I still have that notebook.

Writing can help relieve stress, improve mood,
and even physically heal the body.
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When I was in junior high and high school, I mainly wrote for school—both creative and academic pieces. I kept journals on and off (I would love to say that I’m an avid journaler, but I’m really terrible at it). When in college, I wrote poetry and short pieces that really delved deep into my emotional state and helped me reflect on what was happening in my life. When a friend attempted suicide, I wrote about it. When my grandfather died, I wrote about it. When I saw incredible acts of kindness, I wrote about it. When I saw a pretty leaf dancing in the rain, I wrote about it.

The important thing is this: I wrote. And I completely believe that it has helped keep me sane all these years. As I’ve delved deeper into career life, it’s become harder to keep up with personal writing, but whenever I do manage to sit down and write something, it has an incredibly therapeutic effect.

I am a perfectionist by nature, so when I read over my infrequent journal entries, my creative works, and even my third-grade journal, part of me wants to lament over the bad grammar and spelling, the awkwardness of phrasing, the way it just isn't as good as [insert famous writer]. I know that’s an impulse lots of people have—and it’s often what keeps people from writing. But it shouldn’t.

Writing has been linked to a multitude of benefits for both the mind and body. It can promote emotional healing through expression of emotion (rather than bottling it up). You can always talk to paper, even if you can’t talk to a person. It can also improve attitude, especially in people battling potentially terminal diseases like cancer. And attitude, studies have shown, can affect everything from whether you actually get better to how much you enjoy your life.

Writing can also help us remember what we’re thankful for in life. It can get things off our chest before we go to bed for the night—meaning that sleep could be more restful as well. Improved mood, lower stress and depression levels, healing and more have all been linked to expressive writing.

You don’t have to be “good” at writing to love it. You just have to do it.

Not All Stress Is Created Equal

All of us know what it’s like to be stressed. Some of us might be blessed with just a smattering of it here and there, while others may not even remember what it’s like to not be stressed. Some show their stress, while others hide it. And though many can keep it under control, not everyone can.

Not all stress is created equal, and while some stress might not do much harm, too much definitely will.

Understanding stress is a big part of keeping it under control.
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It seems intuitive to just assume that any stress is bad—but that’s not true. Stress is what allows us to deal with intense situations, like avoiding a car collision or meeting a tough deadline. It helps us focus in on a goal without letting chaos get in the way.

Our bodies tense up in these moments; our heart rates rise, our blood vessels constrict, and our bodies move into a heightened state of awareness. That moment is supposed to pass fairly quickly, allowing our bodies to return to normal. The problem comes in when it doesn’t pass, and when we don’t give our bodies and brains a chance to rest.

Mediterranean Diet Craze

The Mediterranean Diet calls for plenty of
fruits and veggies every day.
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It seems like all I’ve been reading about in the past few days are the Oscars and the Mediterranean diet. I didn’t watch the Oscars, but I’ll admit I jealously perused all the gorgeous gowns afterwards. And of course once I was done with that, I could move on to reading about the Mediterranean diet.

Of course, I’d heard of it before, but I had never looked into the specifics. Now it’s all the craze. That’s because a recent study confirmed that eating a Mediterranean diet can help reduce the risk of developing heart disease. A survey of about 1.5 million healthy adults showed that those who ate Mediterranean diets had a reduced incidence of not just heart disease, but also cancer, cancer mortality, Parkinson’s and Alzheimer’s diseases.

These are the key components of the Mediterranean diet, according to the Mayo Clinic (information taken directly from their site):

The Mediterranean Hierarchy
Image from diet-blog.com

• Getting plenty of exercise
• Eating primarily plant-based foods, such as fruits and vegetables, whole grains, legumes and nuts
• Replacing butter with healthy fats such as olive oil and canola oil
• Using herbs and spices instead of salt to flavor foods
• Limiting red meat to no more than a few times a month
• Eating fish and poultry at least twice a week
• Drinking red wine in moderation (optional)

Part of what makes the diet so great is that it is very low in LDL cholesterol, which we call “bad” cholesterol. It also has a good amount of healthy fats in it, which come mostly from nuts and fish. Grains are not avoided in this diet; rather, whole grains are eaten in moderation.

Mediterranean cookbook, Cook Yourself Sexy
Image from candicekumai.com

The hierarchy of foods is laid out like this: on the first tier (largest) are olive oil, fruit, nuts, vegetables, and whole grains; on the second tier (middle) are fish and poultry; and on the third (smallest) tier are red meats, dairy, processed meats, and sweets.

“The fear of fat is so 1980s,” said Candice Kumai, author of Cook Yourself Sexy. “That’s not what’s making you fat. It’s the overconsumption of grains, heavy meats, the wrong type of fats, refined sugar and processed foods.” Kumai’s new book features Mediterranean recipes like Lox, Caper and Rocket Salad; Roasted Tomatoes with Barley; Clams in White Wine Sauce Over Linguine; and Cherry-Pistachio Biscotti—all full of nutrients and omega-3s. Yum!

The Truth About Tanning

When I was young, I was convinced that my pale skin was ugly. Ever since I can remember, being tan has been considered beautiful—while pale skin was called things like “sickly” and “pasty.” I was jealous of my friends that could tan effortlessly, of my sister who always had a healthy golden glow, of my best friend who couldn’t burn if she tried. I, on the other hand, burn in about five minutes.

Society says tan is more beautiful. What do you think?
Image from thebeachtanning.com

My mother tried to convince me countless times that my pale skin was just as beautiful as others, but I never believed her. To this day, I still find myself wishing at times that I were just a little darker, a little less red and a little more bronze. But mostly I’ve accepted that my Irish heritage simply doesn’t allow for that—and that’s okay.

Because even as I look wistfully at my tan friends, I remember that all the safe sun practices I’ve learned and all the tanning booths I haven’t visited make me much less at risk for developing melanoma. I have also found role models in pale-skinned actresses that I consider incredibly beautiful people—Anne Hathaway, Nicole Kidman, Evanna Lynch, Naomi Watts, Scarlett Johansson, Zooey Deschanel, and more.

Anne Hathaway
Helga Esteb / Shutterstock.com"

Zooey Deschanel
Helga Esteb / Shutterstock.com

My grandfather worked on the railroad for years, spending long days in the sun. In his later years, he developed melanoma on his face and ears, and I can remember him regularly having to get spots removed before the cancer spread to the rest of his body.

Tanning beds have been around for years now. And even though scientific data conclusively points out that using them increases the risk for developing melanoma, we continue to put ourselves in harm’s way. One Tacoma, Washington, couple found out the dangers of tanning the hard way when their daughter Shelley died of melanoma at just 34-years old. She had tanned frequently as a teen and felt like she needed to be tan to be beautiful.

“The paradigm that tan skin is beautiful killed my daughter,” said Shelley’s father, Peter Rasmussen. Rasmussen has urged lawmakers countless times over the past four years to pass a bill that would ban teens and children from tanning beds, and Washington State is currently considering raising the minimum usage age up to 18.

About 13% of teens say they've used tanning beds.

Image: Shutterstock

And while even some tanning salon owners in Washington agree that tanning is unnecessary and dangerous especially for children, not all states even have a minimum tanning age. Missouri is one of 17 states that has no age restriction for tanning.

In a study conducted by researchers at Washington University, children as young as 10 years old have used tanning beds in Missouri. Of the 243 randomly selected salons surveyed, 65% said children between 10 and 12 would be allowed to use tanning beds. In many cases, operators at salons also claimed that there were no risks associated with indoor tanning and that tanning would help protect them from future sunburns.

But those claims are completely false. According to the CDC, users of tanning beds under the age of 35 have a 75% increased risk of developing melanoma, eye cancer, changes in skin texture, and other problems.

Tan Mom before and after tanning beds
Image from people.com

Mostly, this article was brought on by the recent news that New Jersey’s infamous “tan mom” had all charges against her dropped. She was accused of taking her 5-year-old daughter tanning with her, which is illegal in New Jersey where the minimum age is 16. The world made fun of tan mom for her burnt appearance, but it mostly made me sad to see that someone would become so obsessed with being tan. She was ridiculed, but she was just an extreme example of what happens when we define beauty so narrowly.

Her daughter is being taught that she isn’t beautiful just the way she is—that she has to conform to ridiculous parameters set by society to be considered pretty. And that’s just not true. We are each made a little differently, and it’s so important that we pass that message on to our children. No matter your natural skin color, eye color, race, ethnicity, size, shape...

You are beautiful, just the way you are. Pass it on.

YOU ARE BEAUTIFUL!
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