By Sara Chemel
The phrase “knowledge is power” perfectly captures the mission of JScreen, a nonprofit genetic screening and education program that aims to provide people with easy access to information about their health.
JScreen’s unique testing process ensures that one can access their healthcare information with ease from the comfort of their home. For their ReproGEN test, which focuses on genetic diseases that could be passed to one’s children, JScreen uses an at-home saliva test which tests for over 200 known genetic diseases including but not limited to those that are especially prevalent in the Jewish population. Upon the conclusion of laboratory testing, results are reviewed and reported back to the patients by a genetic counselor through a private tele-health genetic counseling session. What the individual chooses to do with the provided information is left to his or her own discretion, but JScreen remains a staunch support system and an excellent source of resources.
JScreen has historically fostered a relationship with Yeshiva University by hosting a screening event on campus annually and testing thousands of Yeshiva University students. The immense impact JScreen has had on students over the years is palpable. “Right off the bat, I will say JScreen saved my life. If I hadn’t used JScreen’s services when they came to Stern, I would be dead right now!” insisted alumna Yardena Goldstein (SCW ‘18). Through JScreen testing, Mrs. Goldstein was informed that she suffers from Factor XI deficiency, a genetic disorder prevalent in Ashkenazi Jews which causes blood to clot ineffectively. Other common symptoms include continuous bleeding from wounds, frequent nosebleeds, and heavy menstrual periods.
When Mrs. Goldstein became pregnant for the first time, she informed her obstetrician of her diagnosis and was sent for additional testing. Based on the test results, she received transfusions prior to giving birth and delivered her daughter without complications. Two weeks after her daughter’s birth, Mrs. Goldstein began bleeding uncontrollably. She was rushed to the hospital and underwent an emergency procedure to control the bleeding. Mrs. Goldstein reflected on how integral it was that she went through the JScreen testing process. She said, “If I didn’t know through JScreen that I had Factor XI deficiency, my doctors would have had no idea what they were dealing with and I would have died. Usually people can live their whole lives without knowing they have Factor XI deficiency but in my case, it was so important that I had that information.”
Additional alumni were similarly grateful for what they discovered about themselves through undergoing JScreen’s genetic testing. One anonymous Stern alumna reported, “I got tested with JScreen the first semester I was on campus in Spring 2019. I found out that I have Gaucher Disease. I had no idea. I had no symptoms. I learned something completely new about myself.” Gaucher disease is fairly common amongst Ashkenazi Jews and symptoms include easily fractured bones, anemia, and bleeding problems. She considered the ramifications of her diagnosis stating, “Even though it hasn’t affected my life, I know it can affect my life in the future, as well as the lives of my future children. I’m so thankful to JScreen for supplying me with that information!”
Another Stern alumna related how undergoing JScreen testing impacted not only her health, but the health of her family members. She said, “I learned that I am a carrier for a blood disorder which often causes symptoms in carriers, such as easy bruising and nosebleeds. I had many nosebleeds as a kid, so getting that medical information about my body felt really empowering. I’m also a carrier for a rare hearing loss disorder. When I got tested, my niece had already had hearing aids for a few years. It was very helpful to be able to turn to my sister and tell her that this may be a genetic issue. Now my sister and her husband plan to get tested with JScreen to find out if the hearing loss is genetic.”
It is evident that JScreen has deeply impacted the Yeshiva University community by affording students the opportunity to learn more about their own health and prepare for the future. While genetic testing tends to be associated with family planning and carrier screening, the information provided by JScreen also allows for better understanding of oneself. Look out for the next JScreen campaign on campus!