A Cry in the Wilderness: How Jewish Organizations Can Help With Jewish Genetic Diseases

Across the world, especially here in the United States, Jews have access to an incredible network of Jewish organizations, but where is the support for those suffering from Jewish genetic diseases?

Growing up, I was a privileged beneficiary of an incredible Jewish summer camp (Ramah Ojai), Jewish education at Brandeis Marin, and expansive Jewish social networks. The dedication of Jewish educators, counselors and leaders provided the necessary space and tools to develop my love of Judaism and Jewish curiosity. They provided the foundation for my current relationship with my Jewish identity, history and homeland.

And thanks to the awe-inspiring work of Hillel and Chabad, at UCLA I have found spaces that feel like my Jewish home. These institutions are core pillars of the Jewish community on campus, and their tireless work contributes incalculably to the experience of Jewish students across campus.

Yet despite the hard work of incredible Jewish organizations, there is still a gap that we have an opportunity to fill when it comes to supporting all segments of the Jewish population. A significant number of people in our community suffer from Jewish genetic diseases, and many feel that they have been left largely unsupported. Many in-need and at-risk Jews are lacking systems of Jewish emotional, financial and social support. Jewish organizations are in a unique position to provide these systems to support Jewish youth (and adults) with Jewish genetic disorders.

A significant number of people in our community suffer from Jewish genetic diseases, and many feel that they have been left largely unsupported.

It is medically documented that Ashkenazi Jews are up to ten times more likely to carry and contract melanoma, pancreatic, ovarian, prostate, breast and colon cancer. Consequently, cancer diagnoses have become a painful reality of American Jewish life.

Aside from cancer, Ashkenazim also suffer from much higher than average rates of disabling gastrointestinal conditions. In fact, Crohn’s was named after the work of two Jewish doctors and their study of 14 Jewish patients. So while Judaism and food go hand in hand, so do dietary restrictions and highly variable, life-affecting GI illnesses.

With data showing that Ashkenazi Jews suffer from a range of conditions at much higher rates, how can Jewish communities become better at providing support? Possible solutions might include establishing local Jewish support groups for those living with cancer, young adults with terminally ill parents, and those suffering from highly embarrassing and destructive GI conditions. While some such organizations do exist, many suffering and often young Jews still feel isolated, marginalized and alone.

When I was around 16 years old, away from home at summer camp, I was suddenly unable to defecate for over two weeks. I was in severe pain, discomfort, and with no idea what was wrong. Unfortunately, I was not taken seriously, and my suffering was left largely unaddressed. In the ensuing months, I visited doctors and was tested ceaselessly. I felt humiliated, alone and in constant pain. Constipation is not perceived as a disabling illness, yet it impacted every aspect of my life. Despite visiting some of the most acclaimed—and, as it happened to be, Jewish—physicians, my experience was called into question.

Despite the increased prevalence of GI conditions among the Ashkenazi Jewish community, I feel uncomfortable speaking about my disease. Jewish events often inquire about eating restrictions; however, they do not usually directly address or recognize the issues Ashkenazim face. While it’s true, for example, that eating a bit of challah on Shabbat fulfills a mitzvah, it’s also true that some Jews have GI issues that make doing so a physical liability. We can also learn to be more sensitive with our words. Asking questions like, “Are you sure you don’t want any?” or “Why do you eat so much?” may leave community members feeling judged and alone.

Despite the increased prevalence of GI conditions among the Ashkenazi Jewish community, I feel uncomfortable speaking about my disease.

It’s important to note that the need for more support systems extends to outside the Jewish community. Outside of the Jewish community, my experiences have been even worse. After a year of living in UCLA on-campus dorms, I realized I needed a home where I felt more comfortable expressing my Jewish identity. Living off-campus, I applied for continued access to the UCLA dining hall. Yet, despite two letters from renowned physicians explaining how dining hall access is critical for my ongoing health (my condition requires difficult to attain food variety), I have been denied permission to buy a UCLA meal plan twice.

But my predicament is a direct product of my Jewishness: my GI condition resulting from my Jewish ancestry, and my desire to live off-campus in order to better express my Jewish identity. Where do I turn? While my case is unique, the struggle of Jews suffering from GI conditions is not. In my moment of need, I often feel alone, and I long for ways to feel supported by my community.

Jewish genetic diseases affect and damage not only the afflicted, but their families as well. An absence of support for the consequences of these illnesses impacts not only physical but also mental and spiritual health. A young Jewish adult at UCLA with two cancer-stricken parents reported, “When I was 18 years old, and my parents were diagnosed with cancer, I hoped for but did not expect support from my peers … but I was deeply saddened by how far my Jewish community fell short.”

Despite how pervasive cancer has become in the Ashkenazi community, some young adults feel unsupported by their community. While Jewish wisdom can provide solace in a time of need, it can also be misapplied in some cases, which can result in belittling one’s lived experience. We often make statements like, “God burdens us with suffering we can handle,” “God protects the righteous and curses the evil,” and “All things happen for a reason.” But when used out of context or insensitively, they can exclude and damage many who are suffering from unseen anguish. Such insights often ring hollow in the face of challenges such as a parent receiving a terminal cancer diagnosis, for example.

With both parents no longer able to work, the young adult at UCLA does not know where to turn. “My entire life, I have always heard about the incredible support of Jewish organizations and non-profits, but in my time of need, who is here to support me? I feel unseen by my community.”

This student, myself and many others continue to suffer the consequences of Jewish genetic diseases. Young adults suffering from Jewish genetic diseases have no easily accessible support system within the Jewish community. The Jewish community must make greater efforts to provide such people with critical support.

At a time when Jewish institutions are looking to find ways to meaningfully connect with and support Jewish youth and adults, helping them in their moment of need whether due to their own genetic illness or those of their parents would be a profound blessing. Examples of such assistance include: providing education about these illnesses; support groups for Jewish teens experiencing these illnesses or with sick parents; help in seeking accommodation from work or universities to navigate these illnesses with dignity; and financial, spiritual or emotional support.

As educator Arie Hasit beautifully states, “This is indeed the essence of Judaism: Our purpose is to make God’s presence felt through the creation of community.” And as Rabbi Jacobs notes, “In order to be a suitable place to live, a community must provide for all of its members’ spiritual and physical needs.”

Supporting those suffering from diseases, especially those that affect Jews specifically, is not an option but a religious obligation. For the Jewish community to thrive it must remain a home for all community members seeking its refuge, championing the voices of those who have gone unheard and ensuring that those suffering are never left alone. Only through embracing, sheltering, protecting and providing for suffering community members can a Jewish community flourish.

Isaac Levy is a student of the UCLA honors and Scholars programs, an entrepreneur driven by curiosity, a love of learning and the ambitious desire to disrupt and positively change our world. Email him at: ilevy24@g.ucla.edu