{"id":58691,"date":"2016-02-11T17:00:23","date_gmt":"2016-02-11T22:00:23","guid":{"rendered":"https:\/\/rarediseases.org\/running-on-air-for-rare-disease-day\/"},"modified":"2022-12-01T11:58:03","modified_gmt":"2022-12-01T16:58:03","slug":"running-on-air-for-rare-disease-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/running-on-air-for-rare-disease-day\/","title":{"rendered":"Running on Air for Rare Disease Day"},"content":{"rendered":"

\u201cI want to shake up what people think is possible,\u201d says Mary Kitlowski \u2013 \u201c both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.\u201d<\/strong><\/em><\/p>\n

Mary has taken on what for most seems insurmountable \u2013 running races across America with an oxygen tank strapped to her back.\u00a0 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.\u00a0 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. \u00a0Patients can have significant morbidity related to their lung disease, and the irreversible damage may progress to respiratory failure.\u00a0 Mary knows this too well \u2013 her sister who also has PCD recently had a lung transplant.\u00a0 Mary herself has lung function of only 40%.\u00a0 \u00a0Balancing her work, family life and running, Mary does daily treatments \u2013 a regiment of bronchodilators and airway therapy techniques to clear her lungs.\u00a0 She is on oxygen, frequent antibiotics, and is sometimes hospitalized \"Maryand on IV.<\/p>\n

But when Mary says, \u201cI want people to know that being on oxygen doesn\u2019t have to limit them,\u201d she means it.\u00a0 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! \u00a0\u00a0\u201cSome people talk about being embarrassed about wearing oxygen,\u201d Mary explains.\u00a0 \u201cI don\u2019t feel that way at all.\u00a0 I want people to know I wear oxygen and that it\u2019s not going to stop me.\u00a0 It\u2019s important for people to know that just because someone is on oxygen doesn\u2019t mean they should be out of sight.\u201d\u00a0 Mary\u2019s 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. \u00a0Years later, as an adult, Mary thought that there \u201chad to be a way of doing it,\u201d and picked up \u2018The Complete Idiot\u2019s Guide to Jogging and Running.\u2019 \u00a0She 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. \u00a0<\/strong>Mary\u2019s 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.\u00a0 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.\u00a0\"Mary<\/p>\n

Mary has now launched a website<\/a>\u00a0to raise awareness through her running, and to raise funds for the PCD Foundation.\u00a0 Mary is competing in the 2016 Run the Edge Challenge to raise awareness of PCD (running 2016 team miles in 2016!). \u00a0The Disney World Half Marathon, the Potomac River Run Half Marathon and the Army 10-Miler (DC) \u2013 which she ran with a PICC (peripherally inserted central catheter) line and in the middle of an IV course, determined \u201cnot to let a lung infection get in her way\u201d \u2013 are just a few of Mary\u2019s recent races.\u00a0 Coming up, Mary has San Francisco\u2019s Bay to Breakers and the Star Wars DarkSide (FL, 5k, 10k and half-marathon \u2013 3 races in 3 days!!!). \u00a0Mary 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. \u00a0<\/strong>It\u2019s not always easy though:\u00a0 despite her race record, sometimes Mary can barely run for more than a minute.\u00a0 Mary knows what it\u2019s like not to be able to breathe easy, and that\u2019s why she runs.<\/p>\n

Mary\u2019s dedication to making a difference for those with rare diseases is without bounds. \u00a0As she says, the issues facing rare disease groups are \u201chuge.\u201d\u00a0 \u201cI 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.\u201d\u00a0 And so Mary set out to be chosen as Runner\u2019s World \u201cMost Awesome Runner,\u201d 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<\/p>\n

This February, in honor of Rare Disease Day, Mary is posting daily on her facebook page about a different rare disease.\u00a0\u00a0 \u201cThere are 7,000 rare diseases, and most people can\u2019t even name one,\u201d she says.\u00a0 \u201c<\/strong>All of these people are dealing with such tough stuff, and I want to bring recognition to the fact that these people don\u2019t let their challenges stop them.\u201d\u00a0 <\/strong>To benefit the PCD Foundation and the National Organization for Rare Disorders (NORD), Mary has launched the Rare Disease Day 2016 Virtual Race.\u00a0 <\/strong>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.\u00a0\u00a0Mary says seeing the response from the community has \u201clit the fire under her even more to make things easier for people\u201d and that she \u201cwon\u2019t stop\u201d until change happens.\u00a0 As Margaret Mead said:\u00a0 \u201cNever doubt that a small group of thoughtful, committed citizens can change the world, indeed it is the only thing that ever has.\u201d Mary makes sure to wear her \u201cRunning hard so others can breathe easy t-shirt\u201d when she hits the road.\u00a0 She is a true inspiration not only to those with PCD, but to all that hear of her \u2013 embodying the concept that there is nothing that can\u2019t be done and that anyone can make a difference.<\/p>\n

Join Mary in her efforts by registering for her virtual race during Rare Disease Day here.<\/p>\n

To learn more about PCD, please visit the PCD Foundation<\/a> for more information.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cI want to shake up what people think is possible,\u201d says Mary Kitlowski \u2013 \u201c both people with rare diseases, and people without. If I can make a difference by … <\/p>\n

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