Having a disability or chronic health condition saddles the person with more than just the physical complaint. One has to struggle with the social meaning of that disorder as well. Often society is not very accepting of illness and disability and the person affected becomes stigmatized as a result. Stigma is a common problem among the disabled…

Of the nearly 7,000 rare diseases identified by the National Institutes of Health (NIH), only a few hundred currently have treatments. The development of therapies for rare diseases is often hampered by the special challenges of conducting the needed studies for rare disease drugs and medical devices, such as small numbers of patients and the fact…

This is a Pittsburgh story. It is about a boy named Michael Charles Metil--a boy that transformed many lives, including the author's. While visiting grandparents over the Christmas holiday in Latrobe, Pennsylvania in 1993, Michael became sick. He was lethargic, vomiting, and had some diarrhea. Little did his parents realize how very sick he was,…

How does one "manage" a disease? For most patients, it feels like the disease manages them. It effects how a person feels, their energy level, healthcare expenditures, doctor appointments, longevity and, ultimately, the individual's quality of life. However, disease management turns the tables on disease and puts patients and their physicians in…

The arrival of summer signals a season of endless days of swimming, fishing, summer camps, and other outdoor activities. For children with chronic or terminal illnesses, it can be difficult to participate in many of these activities as well as challenging for parents to find summer camps that not only engage their children, but also offer the…

In February of 2000, "Exceptional Parent" introduced readers to the Crowley family. The author profiled John, Aileen, and their three children: Megan, Patrick, and John Jr. They told "Exceptional Parent" that in 1998 both Megan and Patrick were diagnosed with Pompe disease, a progressive, multisystemic, debilitating, and often fatal muscular…

Smiles can do so much for an individual, regardless if a person is the giver or the receiver. When someone smiles at a person, they perceptibly see or feel something they like about that person, and that makes him or her feel special. The person smiling obviously has some joy they wish to share, and it is apparent in their smile. Little Brady…

Eighteen years ago, the author's son Teddy was born with an unbalanced chromosome translocation of 10/12, leaving him with severe disabilities, medically fragile, and chronically ill. The author describes how her entire world was changed that day. Through it all, her journey through life has been an extraordinary educational experience, despite…

Families are often taken by complete surprise when they learn that they have or will have a child with special healthcare needs. Such occurrences, for the most part, are neither preventable nor expected. Immediately, the family is faced with major changes in their lives, their finances, and the long-term expectations of their child. In this…

This article describes the Victory Junction Gang Camp, a not-for-profit, NASCAR-themed camp for children with chronic medical conditions that serves 24 different disease groups. The mission of the camp is to give children life-changing camping experiences that are exciting, fun, and empowering in a safe and medically sound environment. While doing…

Many children and adults with special healthcare needs receive one or more medications on a regular basis. Parents and healthcare professionals who care for these individuals should be aware of each medication and potential interactions with foods/nutrients. Those who require long term or multiple medications are at highest risk for drug-nutrient…

The Washington, D.C. suburb of McLean, Virginia is one of the most affluent areas in the United States. It is also a community of rare and remarkable power, where politics, military might, and corporate interests converge to create the perfect environment for successful non-profit efforts. On any given day of the week, there is a charity ball or…

The mother of a young child with a life-threatening respiratory disorder recounts her personal growth in learning lessons of acceptance, the value of each moment, the courage to change, and love. (DB)