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Feb. 11, 2016

TOPIC: Featured News, Patients & Members, Patient Stories, Get Involved

Running on Air for Rare Disease Day

Posted by Lisa Sencen

“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.”

Mary has taken on what for most seems insurmountable – running races across America with an oxygen tank strapped to her back.  Mary has a genetic lung disease called primary ciliary dyskinesia (PCD), in which abnormalities of the cilia (tiny, hair-like structures that line the airways) cause impaired clearance of mucus and inhaled particles, including bacteria, from the respiratory tract.  Although as many as 25,000 people in the U.S. are suspected to have PCD, only around 1,000 have been accurately diagnosed. Diagnosis is critical because PCD is chronic and progressive and can result in permanent damage to the lungs without early intervention and regular treatment.  Patients can have significant morbidity related to their lung disease, and the irreversible damage may progress to respiratory failure.  Mary knows this too well – her sister who also has PCD recently had a lung transplant.  Mary herself has lung function of only 40%.   Balancing her work, family life and running, Mary does daily treatments – a regiment of bronchodilators and airway therapy techniques to clear her lungs.  She is on oxygen, frequent antibiotics, and is sometimes hospitalized Mary K. 2and on IV.

But when Mary says, “I want people to know that being on oxygen doesn’t have to limit them,” she means it.  She was recently seen on an online video digging herself a long path out from a recent blizzard with more energy than most of us could fathom – and that was before she posted that she had made it out to the Y to go for a run!   “Some people talk about being embarrassed about wearing oxygen,” Mary explains.  “I don’t feel that way at all.  I want people to know I wear oxygen and that it’s not going to stop me.  It’s important for people to know that just because someone is on oxygen doesn’t mean they should be out of sight.”  Mary’s story of how she started to run is remarkable. Despite her illness, Mary had been a sporty child, but because of her health issues, she was kept aside when it was time to run the one-mile in gym class.  Years later, as an adult, Mary thought that there “had to be a way of doing it,” and picked up ‘The Complete Idiot’s Guide to Jogging and Running.’  She started by literally putting one foot in front of the other, and although at first she could barely make 15 seconds, she eventually worked her way up to an hour of running at a time.  Mary’s disease continued to take its course, however, and when she hit a period of infections, she went back to barely being able to run for one minute at a time.  Mary was prescribed oxygen, and started running again, and now, with an oxygen tank strapped to her back, she runs/walks, and trains almost daily, plugging her portable oxygen concentrator in for long workouts. Mary K. 3

Mary has now launched a website to raise awareness through her running, and to raise funds for the PCD Foundation.  Mary is competing in the 2016 Run the Edge Challenge to raise awareness of PCD (running 2016 team miles in 2016!).  The Disney World Half Marathon, the Potomac River Run Half Marathon and the Army 10-Miler (DC) – which she ran with a PICC (peripherally inserted central catheter) line and in the middle of an IV course, determined “not to let a lung infection get in her way” – are just a few of Mary’s recent races.  Coming up, Mary has San Francisco’s Bay to Breakers and the Star Wars DarkSide (FL, 5k, 10k and half-marathon – 3 races in 3 days!!!).  Mary is crossing the country, state by state, to raise awareness of PCD and rare diseases, and so far within the past year has raced in 8 states.  It’s not always easy though:  despite her race record, sometimes Mary can barely run for more than a minute.  Mary knows what it’s like not to be able to breathe easy, and that’s why she runs.

Mary’s dedication to making a difference for those with rare diseases is without bounds.  As she says, the issues facing rare disease groups are “huge.”  “I wanted to raise awareness about the difficulties of diagnosis and the importance of proper treatment and to see rare disease groups get the attention they deserve.”  And so Mary set out to be chosen as Runner’s World “Most Awesome Runner,” the only competitor with an oxygen tank on her back, and was a semi-finalist (top-10), out-pacing many competitors, and garnering thousands of votes and gaining much exposure for PCD and rare diseases in the process.Virtual Events-Running on Air

This February, in honor of Rare Disease Day, Mary is posting daily on her facebook page about a different rare disease.   “There are 7,000 rare diseases, and most people can’t even name one,” she says.  “All of these people are dealing with such tough stuff, and I want to bring recognition to the fact that these people don’t let their challenges stop them.”  To benefit the PCD Foundation and the National Organization for Rare Disorders (NORD), Mary has launched the Rare Disease Day 2016 Virtual Race.  Participants worldwide can join Mary and others worldwide in running or walking a 5k, 10k or half-marathon any time in February and all registered will receive a beautiful medal of the earth.  Mary says seeing the response from the community has “lit the fire under her even more to make things easier for people” and that she “won’t stop” until change happens.  As Margaret Mead said:  “Never doubt that a small group of thoughtful, committed citizens can change the world, indeed it is the only thing that ever has.” Mary makes sure to wear her “Running hard so others can breathe easy t-shirt” when she hits the road.  She is a true inspiration not only to those with PCD, but to all that hear of her – embodying the concept that there is nothing that can’t be done and that anyone can make a difference.

Join Mary in her efforts by registering for her virtual race during Rare Disease Day here.

To learn more about PCD, please visit the PCD Foundation for more information.