by Dena Winchester

If you are a comic book dweeb, as I am not, you will know that Bruce Wayne chose the name ‘Batman’ because we was afraid of bats as a child, and chose to use his greatest phobia against his enemies. This is probably the most commendable thing I’ve ever heard, and I’m not a major Batman fan. It takes major guts to use something you are scared of to your advantage. You never know when it can turn on you and work, rather, to your disadvantage.

I am like Batman. I do not have a Batmobile, a mansion, or a fancy butler, but I used my fear to my advantage. I was—I still am—afraid of being rejected because of my lipodystrophy, afraid of people thinking I was weird because of it. Instead of hiding, I published my blog, and published my experiences of living with no fat on my body.

I am now in the midst of outplaying another fear: my fear of genes. Genes are unpredictable, yet they can now be tracked. Genes are manipulative, yet can also be manipulated. Last summer, I spent a month shadowing a genetic counselor in a hospital setting, to learn about the field. A genetic counselor is, more or less, Google Translate. They take the complicated language of molecular biology and transform it into a language that the basic human can comprehend.

Genetic counselors also discuss genetic carrier screening with their patients. The screening test is simple; just fill a tube with your saliva—and hence, your DNA—and you can screen a variety of related genes. With screening, you can discover what disease genes you carry, and could possibly be passed on to your loved ones. In the case of a negative result, you can gain peace of mind. In the case of a positive result, you can be proactive and get your partner screened to help prevent genetic diseases in your future child.

It is not easy to be Batman. It is, however, easy to access screening. It is not only available at your local geneticist’s office, but you can order a kit directly to your home.  Organizations such as JScreen mail out kits for genetic carrier screening. Just open, swab your cheek, spit in that cute little tube, and go! This is the easiest part of screening, and what comes next is when your inner Batman will kick in.

I am in the process of declaring myself a Genetics major at University to learn as much as I can about genes. As someone with a genetic disease, I fear what is lurking in my DNA—was mine a random mutation, or is this fat-stealing mutation something I could potentially pass on to my offspring? This is not a fear that I alone face—everyone is at risk of carrying mutations for genetic diseases. The question is, who is brave enough to get tested?

Knowing too much about yourself may be dangerous. Knowing too much about yourself can save your life, or the life of someone you love dearly. Be like Batman. Face your fears.

Dena is a 19-year old genetics major with a strong interest in and passion for genetic counseling. Diagnosed with generalized lipodystrophy at age 11, Dena has transformed herself into an advocate for positive body image and awareness of lipodystrophy. She published her blog, The Skinny Girl, two years ago, which has since reached over 50,000 views.