Kitlowski suffers from primary ciliary dyskinesia (PCD), a rare genetic disease that affects about 25,000 people in the United States with only 500 confirmed cases. Primary ciliary dyskinesia is also sometimes referred to as Kartagener syndrome or immotile cilia syndrome. Cilia are minute hair-like projections from cells which are found in various organs throughout the body. Individuals with PCD have faulty motile cilia resulting in patients experiencing recurrent infections in the lungs, ears and sinuses as well subfertility or infertility in both men and women.
Kitlowski, a native of Silver Spring Maryland, was just three years old when she first starting experiencing symptoms related to PCD but it wouldnt be until she was 17 years old that she and sister would both be correctly diagnosed with the disease. However Kitlowski has never been one to sit by the sidelines and was able to go on to attend the University of Maryland Baltimore County (UMBC) where she graduated with a bachelors degree in Information System Management.
Kitlowski had been an avid runner since her early 30s, despite having PCD, chronic bronchitis and asthma, but it wasnt until a serious lung infection and subsequent diagnosis of bronchiectasis in 2001 that she realized her breathing difficulties were a lot more complicated. Kitlowski feared she would not be able to run again.
Despite the diagnosis, Kitlowski decided she would not let the disease defeat her. With the love and support of her husband, Kitlowski began building up her exercise tolerance slowly and steadily minute by minute and in March 2014, Kitlowski resumed running again.
In September of 2014 she participated in her first race, a 5K, with her portable oxygen concentrator fully visible on her back. That October she participated in the Army Ten Miler. With a friends help, a local Baltimore news station featured her in a news piece and Running On Air was born. Kitlowskis brainchild, the organization was created to raise awareness of PCD and other lung diseases.
Focusing on a campaign to raise awareness for lung diseases and for those who use oxygen, Kitlowski wants to change the misconceptions that people who need oxygen cant live normal and active lives and instead can integrate exercise, work and leisure activities into their daily routines.
Through her organization, she intends to tackle several issues including oxygen coverage and reimbursement and regulations around clinical trials for small disease groups. With a website (www.RunningOnAir.org) and Facebook page, Kitlowskis aim is to raise awareness by running races in all 50 states.
Kitlowski says, I race to make a difference for those with compromised lungs. If even one person who sees me thinks I dont have to be limited by my disabilities or by my oxygen, then my running is worth it. An inspiration to those who suffer from COPD and related illnesses, Kitlowski demonstrates step by step and breath by breath that she really can do anything.