"Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.When I was about 8 years old, I broke my arm and it did not heal very quickly. According to my mother, I suffered from a great deal of pain, and most doctors either didn't know what to do or diagnosed me with the wrong condition. Eventually, a doctor, Dr. Fry, listened to my mother's pleas for help and delved further into my symptoms. I had multiple surgeries on my neck and head, including brain surgery, to remove tumors. The doctors hoped to find live cells to determine what the disease was. Eventually, we found out I had Langerhans Cell Histiocytosis (LCH), at that time called Histiocytosis X.
"In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment.
"The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages.
"It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an 'orphan disease,' meaning it strikes too few people to generate government - supported research."
"Through the work of investigative journalists, we have learned how informal alliances of pharmaceutical corporations, public relations companies, doctors’ groups, and patient advocates promote these ideas to the public and policymakers—often using mass media to push a certain view of a particular health problem. While these different stakeholders may come to these alliances with different motives, there is often a confluence of interests—resulting in health problems routinely being framed as widespread, severe, and treatable with pills, as has happened recently with social anxiety disorder [5]. Currently, these alliances are working with the media to popularize little-known conditions, such as restless legs syndrome [6] and female sexual dysfunction [7], in each case lending credence to inflated prevalence estimates. In the case of female sexual dysfunction, there has been a serious, though heavily contested, attempt to convince the public in the United States that 43% of women live with this condition (see pp. 175–195 in [2]). This is happening at a time when pharmaceutical companies perceive a need to build and maintain markets for their big-selling products and when pipelines for new and genuinely innovative medicines are perceived as being weak." (Moynihan & Henry, online)If you're interested in reading more about this type of "Bad Science," I recommend reading the website and online journal named after its topic by Ben Goldacre:
Love of Life, by Kyra and Chris, is a journal chronicling the couple's marriage, pregnancy, and parenthood. The couple became engaged on Valentine's Day and wed in May 2008. Kyra gave birth to their first child, Luca, in October 2008, and their second child, Astrid, in April 2015. The journal title comes from one of Chris's favorite names, Adria, which means "love of life."
