College Student with Lipodystrophy Advocates for a Change in Genetic Testing

Dena Winchester, a sophomore at Rutgers University, faces the struggles that come with her condition by advocating for change, reports New Jersey Jewish News. After she was diagnosed with lipodystrophy at the age of 11, Dena battled the thoughts of rejection due to her incredibly petite and skinny physique, which is caused by her rare condition. Rather than hide from those fears, she faced them head-on and decided to do something about it.

Lipodystrophy is a rare disease that halts the body from creating fat cells, which results in being very skinny. Dena expressed that growing up she had body-image issues and it was a difficult time. People would look at her and assume she was anorexic when they simply didn’t know better. Dena believed that her social life would be better if only her body was different. Once she went to Rutgers, her perspective changed– she wanted to use her experience to help make a difference.

Dena aspires to be a genetic counselor in hopes to help others like herself. She is interning for JScreen, a non-profit in Atlanta that focuses on providing awareness and prevention of Jewish genetic diseases. While interning, she helped set-up a DNA testing screening, which was extremely educational and beneficial.

Dena is very determined to learn more about her disease, so that she can hopefully figure out the determining factor that will solve the mystery of how she got it. It may be caused by a random mutation, or an inherited one, and this will tell her whether or not she can pass it along to her future children. The outreach director at JScreen, Hillary Kener, said that 80% of babies that have a genetic disease do not have a family history of it, but surprisingly 2 out of 3 Jewish people are carriers. With JScreen, Dena has been instrumental in helping with genetic rare disease screening, which will help many individuals, since they can prevent the disease from being passed along to their children.

Not only has Dena been dedicating her time and career to help bring awareness and prevention to genetic diseases, she also started a blog to share her stories and experiences in hopes to encourage anyone who has felt that fear of rejection while battling a similar disease. Her blog has been pinged with more than 50,000 views, reaching so many patients that need that encouragement.

To read her blog, you can visit here.


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