Recently I had the unenviable task of diagnosing a thirteen-year-old Arab-American Muslim girl with a fatal illness. It is not widely known that this illness is as common among Arabs as it is among Caucasians. This lack of awareness may have been one reason the child's primary physician overlooked the diagnosis for many years.

The child, two older siblings, and their mother were present when I informed them of the diagnosis. The mother appeared to have educated herself about the illness and seemed prepared to hear the bad news. She broke down at hearing the diagnosis, but quickly regained composure. Surprisingly, there appeared to be no anger or any sense of bitterness toward the primary physician—merely a sense of calm that was quite heartening.

As I talked with them, I mentioned a younger patient in my practice with the same last name who had been diagnosed with the same illness a year ago. As it turned out both patients are closely related. This surprised me because my earlier enquiries about the presence of this illness in the family had drawn a negative response. Soon after I received a panicky call from the mother of that younger child. She hoped that I had not disclosed her child's illness to the second patient's family. I realized that I had inadvertently breached confidentiality and told her so. I apologized, and told her that I had asked about family history of medical illness because it was medically relevant. As I was talking with her, I silently wondered why she had wanted the diagnosis to be kept so confidential.

She must have read my thoughts because she went on to inform me of the huge social stigma of an illness like this in the kind of extended family she lived in. To my great alarm, she informed me that other children in the family had similar symptoms and may have the same illness.

What were the repercussions of this perceived stigma and the secrecy that had ensued? Did the silence of the mother of the first child delay the second patient's diagnosis? Even if the first patient's mother had advertised her child's illness to the family, how many of the family members would have come forward to have their own children tested? Did the answer lie in denial? Did it lie in religion, education, or perhaps culture?

As I discovered, the answer for the most part did not lie in religion. Islam, the religion of both patients' families, encourages patients to seek cures for their illnesses. Historically, there has not been a conflict between science and religion in Islam. One of the attributes of Allah, an Arabic word for God, is that of the Healer (Shafi). Modern western medicine is widely practiced and highly revered in the Muslim world. Much of modern western medicine owes its inspiration to medieval Islamic medicine. There are scores of Muslim physicians practicing in this country, and being a physician is socially desirable as it increases enormously the marriage prospects of both genders.

Could it be that the education level of the first patient's family played a role in keeping the diagnosis a secret? Both families can be accurately characterized as "blue collar." The parent of the first child grew up in the U.S. and was fluent in English. She seemed to understand the concepts of the illness easily, and her education level did not seem to be a barrier.

Again I asked myself, could the answer be largely cultural? The desire to keep any weaknesses, medical or otherwise, from the extended family is not uncommon. For a societal structure in which the family plays a central role, both allegiance to the family and a desire to keep its reputation strong is an understandable concept. In the case of this household, the extended family surely provides solace and support in times of need. At times, however, such a family structure can also become oppressive, limiting individual freedom.

Culture, like religion, does not exist in a vacuum—both culture and religion inform each other. The family has a central role in the Muslim religious landscape. According to Muslim law (Shariah), when a person dies, not only the nuclear family of parents and siblings, but also the extended family of cousins, uncles, and others may inherit the property of the deceased. A central Islamic tenet is that charity is to begin with the family members (qurba). Sermons at marriage ceremonies routinely talk about the union not just of two individuals but also of two families, a principle not unique to Muslims, but possibly more emphasized in Islam than in other traditions and faiths.

The behaviors of these two families reflected cultural norms that are informed partly by their religious beliefs. The desire to cultivate an extended family support system is inspired by the teachings of Islam. However, the limits on freedom that an individual may feel are an almost inevitable cultural consequence of such an extended family structure.

The synthesis of religion and culture is part of the Muslim etiquette or adab, which may be defined as the "genteel culture." This concept of adab evolved over centuries and became universally accepted and practiced over the entire Muslim world. Adab informs the social pattern of Muslims, including conversing with elders with one's eyes downcast, other ways of interacting with each other, the prevalence of poetry in literature, emphasis on geometrical designs in architecture, and modesty in dress code, among other things.

It has been noted that the same religion in different cultures can look and feel very different. Arab Muslims are frequently aghast at the way Islam is practiced, for example, in countries far from the Arab heartland. These differences in the practice of the religion do not necessarily detract from the basic fundamentals of the religion. However, they do make for an interesting mosaic.

Finally, I had to ask myself, where did my responsibility lie in all of this? Did it lie in keeping the illnesses confidential at the behest of the first patient's family? If the diagnoses were kept strictly confidential, then other children in the family would surely have their diagnoses delayed and possibly their lives shortened. My strategy has been to work with the parents of these children and educate them that it is incorrect to assume that an illness must have an attached stigma. In fact, I have been able to quote the verse in the Qur'an that says specifically, "no blame attaches to the lame and the blind and the sick" and they are not to be looked down upon. This has greatly helped in their understanding and acceptance of their children's illnesses. Personally I am gratified that I was able to enhance both families' acknowledgement of their illness.

The other day I saw my thirteen-year-old patient again. She is handling her illness superbly and has possibly the most positive attitude I have seen in someone with such a serious diagnosis.