THE BLOG
05/22/2013 03:59 pm ET Updated Jul 22, 2013

Hand Me a Cape -- I'm a Lynch Syndrome Mutant

I married a guy who loves X-Men and throughout our marriage, I've grown to know and love the characters in Marvel's famous stories too. Storm is my favorite; I think controlling the weather rocks.

It's not just the X-Men that have made mutations a popular topic, at least among children. Those turtles in a half shell, Spiderman and Superman have also given a playful approach to genetic mutations.

The subject of mutants was ingrained in my head as a child of the early '90s who grew up on such "far out" story lines. So when my test results came back and it was official that I had a genetic mutation, I couldn't help but ask for a cape.

After all -- all true mutants get a costume.

Hunt for the Mutant

Thanks to Angelina Jolie and her bold choice to get a double mastectomy, now many in the world understand that some of us humans are born with mutated genes. It's not just a plot for Saturday morning cartoons.

While Angelina deals with breast cancer threats, I deal with colon cancer threats -- a little disease called Lynch Syndrome.

In 2001 when I was diagnosed with colorectal cancer at age 17, my medical team looked for a genetic mutation as the cause of the very early debut of my colon cancer.

You would have thought they'd just seen someone control the weather or a team of turtles run by carrying karate gear. My teenage colon cancer was very rare.

Although my case was unique, I didn't receive the official "mutant" diagnosis at first. At that time, the report said something like: "A variant was found that has never been reported before. She is also the only living family member with colorectal cancer. ... On the other hand, two findings are suspicious about the variant. ..."

The report went on to dictate complicated gene stuff. They knew something went wrong with my MLH1 gene, but my variant had not been tracked before and associated with the disease.

Basically, I had no answers. No official "mutant" title. And therefore, no cape.

For 12 years I had no evidence that I was living with a genetic disorder. Even after my cancer returned for a second time. That was until I got a random call a few weeks ago that started out with, "Is this the same Danielle that visited our hospital in 2001? We have an update on your genetic testing."

I was informed that the laboratory reclassified my gene and that I did indeed have a deleterious variant -- or, as my genetics doctor put it, BAD GENE.

I was "officially" diagnosed with Lynch Syndrome.

What Lynch Syndrome Means

Lynch Syndrome is a genetic disease that puts me at a higher risk for several cancers. At the top -- colorectal cancer. Those with Lynch Syndrome have up to an 82 percent chance of having colorectal cancer before age 70.

I happened to get it at age 17, and again at age 25.

Women with the disorder also have a very increased risk of developing endometrial or ovarian cancer. And next in line (with a much smaller risk rate) include cancers of the stomach, small bowel, pancreas, brain, among other organs.

Those of us with Lynch Syndrome undergo operations to remove the "non-essential" organs -- aka those we can live without. And for those we must keep, it's frequent monitoring for the rest of our lives.

Lucky us -- I'd say we deserve to wear capes.

There are positives to knowing there's a "bad gene" however; colon cancer is preventable and frequent scans of the other organs that cannot be removed will catch disease early and improve survival rates.

Coping With a Genetic Mutation

As I've accepted my genetic mutation I've realized it does require a superhero-like strength to cope with a chronic disease. Superman can't decide he doesn't want to be Superman one day -- he must live with the responsibility forever.

And that's what those of us with genetic mutations face each day, too.

It's a fascinating mind game to look down at your veins and not trust what's running through them. To have no control over what's happening in your body.

It takes a lot of strength to hope that cancer will keep away. And in the event it comes back, make it go away.

Just like all great plot lines involving our beloved mutated characters, there comes a point where each hero or heroine chooses to accept their differences and use their powers for good. They go fight evil, solve problems and keep others safe.

And while I cannot control the weather or fly through the sky, I can share my story and provide hope to someone else. I can raise awareness of Lynch Syndrome and hopefully, prevent a cancer occurrence in another mutant who carries the bad gene.

Maybe even a teenager.

Although I'm a work in progress, I've come to terms and accepted Lynch Syndrome. This world wouldn't turn without bad guys -- and disease -- to fight off. It's just the way things go.

And while I'd rather control the weather some days, I guess I'll stick to fighting colorectal cancer. Although I'm still waiting on my cape.

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