Whom Do You Trust?
The other day I received an e-mail from a friend who recently learned that her 9-year-old daughter had developed type 1 diabetes. Naturally, she was upset. Out of concern for her daughter's welfare, she had been surfing the Web to see what was available to help both her and her daughter cope with the disease. She found quite a bit. There were sites offering diabetes supplies at varying prices, and sites for community and advocacy groups. There were chat rooms where ideas could be exchanged. There were sites that presented research. But none of these pages were the reason she called me. She knew I was the director of a university-based diabetes center, so she wanted my opinion about a site that offered to sell a special compound that promised to regenerate beta cells, "curing" diabetes. Clearly, if it worked, she wanted to obtain this for her daughter and make her diabetes disappear.
Now, my friend is a very intelligent, logical, and educated person. While I was aware of research exploring beta cell preservation and even regeneration, I was not aware that there was now a commercial product out there. Skeptical, I told her I would check it out. I logged on to the site and was impressed by its professional, "scientific" appearance, particularly how it quoted and provided references for research supporting its claims of beta cell regeneration. (I was also impressed by the price; this "supplement" cost hundreds of dollars.) I knew how to find the original research supporting the site's claims and discovered that they all referred to a single animal study that observed what might be characterized as beta cell reactivation, not regeneration. Moreover, the observations with animal models were only suggestive; no evidence was provided that demonstrated beta cell regeneration. What evidence there was certainly did not apply to humans. Yet here was a Web site making claims of regenerating beta cells and asking worried people with diabetes—or, in this case, the parents of a child with this disease—to spend a lot of money on what appeared to me to be as yet unsubstantiated science.
The Internet is a portal to a wealth of information about almost any topic that one can imagine. For a person who suddenly has to deal with the diagnosis of a serious chronic disease such as diabetes, it can provide important and valuable information and support. It can also, however, be a source of misinformation. In this case, it was the vehicle of an unscrupulous person who wanted to capitalize on the fear and concern of a worried parent.
So what is my message to you? Use online sources of information carefully. What may sound quite plausible may be misguided or even patently wrong and only put forth for ulterior motives such as making a profit. I am not suggesting that you do not go online to seek information. Rather, make sure that you validate what you see with your health care team. Being informed is vital. But acting on incorrect information can be dangerous.