Research that Benefits Children and Families

One topic that has recently piqued my interest is Cystic Fibrosis. Cystic Fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: clogs the lungs and leads to life-threatening lung infections; andobstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. (www.cff.org).

In my current profession, I have participated in trainings that include meeting the medical needs of children with Cystic Fibrosis and how those working with these children and their families can become better educated and trained to effectively assist this population. This training also taught me how to become a positive support for these families. Until I became in a working relationship with families who are affected the disease, I had no frame of reference about this disease. I know can state that I am knowledgeable of the financial responsibilities, proper use of medical equipment, different types of medication, diet regimen and physician visits that these families have to attend.

If I possessed the means and knowledge to conduct research studies on Cystic Fibrosis, I imagine some positive contributions from these studies include: finding a cure for the disease (as there is no cure) and helping to create national resource programs that would better assist families who are affected by the disease to better manage the daily tasks associated with this disease. I would also develop alternative medical equipment and medications that are more cost effective for these families.