Morgellons Disease - Does a Celebrity Spokesman Have to Speak Up Before the CDC Takes Action?

I watched “Pride of the Yankees” the other night on television. This classic film depicts the life of Yankee’s baseball player Lou Gehrig (played brilliantly by Gary Cooper). Gehrig’s career was cut short by ALS, a neurological disorder that attacks the muscles and is fatal. To date, there is no cure for this rare disease, although stem cell research shows some promise. Although clinically referred to as ALS, the most people know this condition as “Lou Gehrig’s Disease.”

Then there is AIDS. In the very early 1980s, medical science was baffled by a disease spreading primarily amongst the homosexual community. Little was known about this disease and little was done. Until Rock Hudson came public. Along with Hudson’s brave admission came public awareness. Funds became pouring in to help find a cure for this terrible disease that was not only fatal at the time, but highly contagious. As more celebrities continued to die from the illness, more money flowed in.

Jerry Lewis pretty much retired from the entertainment world to devote his energy to finding a cure for Muscular Dystrophy. Every Labor Day, millions of dollars are donated by those watching his telethon, and many large companies donate to the cause as well. Despite Lewis’ efforts, no cure for Muscular Dystrophy has been found.

The late Christopher Reeve suffered a terrible horse riding accident that left him a quadriplegic. Despite his disability, Reeve chose to raise awareness about spinal injuries and became an advocate for stem cell research, which he believed would eventually enable him to walk.

Actor Michael J. Fox also advocates stem cell research in his quest for a cure for Parkinson’s Disease, which he suffers from. The boyishly charming actor was struck down with this illness at a young age, while he was the father of three small children. Despite his disability, Fox continues to raise public awareness about Parkinson’s Disease and searches for a cure.

Mary Leitao is not a famous person. She is a former biologist whose three children suffer from a rare condition she named “Morgellons Disease,” after reading about symptoms described by Sir Thomas Browne in the late 17th century. Leitao was fortunate; she knew something about the medical community, not only as a former biologist, but as the wife of a physician. Despite her contacts in the medical field, however, Leitao was unable to get anyone to take her seriously as she took her two year old son, Drew, to countless doctors about his persistent condition that included countless itchy sores that sprouted what appeared to be fibers. Because she wasn’t famous, she was curtly dismissed by many doctors as being a “nut case,” who needed psychological treatment. Even after Leitao’s husband died (from unrelated causes) and her other two children came down with the same symptoms, Leitao found it difficult to get anyone to take her seriously.

Fortunately, Mary Leitao, although not famous, is an intelligent woman. She developed a web site to create public awareness for Morgellons and, in 2004, created the Morgellons Research Foundation. She began receiving e-mails from other people who suffered from these symptoms and, through dogged persistence, got some medical professionals to take her seriously.

But not seriously enough. On the whole, the medical community refuses to acknowledge the presence of Morgellons Disease. Instead, many practitioners have found it easier to dismiss those who suffer from this debilitating syndrome as “psychotic.” Even though more than 1,200 people have experienced these symptoms, many within the same family.

After a few sensationalized reports on television in 2006, the Center for Disease Control and Prevention, a federally funded program, began getting pressure to investigate the disease, which strikes mostly in Southern California, Texas and Florida. People who suffered from this disorder began calling and writing their congressmen and congress, in turn, put pressure on the CDC. To date, no clinical trials have been conducted by anyone outside of the foundation. The CDC will not acknowledge the cause of the disease and said that it’s investigation is “ongoing.”

Mary Leitao has been dismissed as an hysterical mom by many in the medical community. Even an article published in the Pittsburgh Post Gazette inferred this, describing her “calmer” moments. But something in the article struck a chord with me.

To paraphrase Leitao’s rhetorical question, she wondered if someone famous had to contract Morgellons before something was done to help. It has to be frustrating, as a mom, whose just a mom, to find help for her sick children. Unless she’s famous.

For more information about Morgellons, or to get involved, visit the Morgellons web site.