Raising Awareness By Walking With Straws

November is PH Awareness month! All around the country and the world, there have been events of all sorts to try to promote awareness of pulmonary hypertension, and to raise funds to go towards research and hopefully a cure one day. Here in Western NY, there was a first-ever fundraiser done by Emily, the daughter of a PH support group member that I run (his name is Scott), and the student athletic committee at the college she attends. It was a 6 minute walk marathon, which is just one of the many tests a PH patient usually does when seeing their PH specialist. It's a baseline test used to see how far a patient can walk in just 6 minutes. It can be done with or without oxygen, and a patient can stop if they need to during the walk, but the timer will still tick if they do.

The 6 minute walk marathon fundraiser required participants to use straws. Why straws? Well, trying to walk breathing only through a straw simulates exactly how a PH patient feels on a daily basis. The shortness of breath felt trying to breath through a straw while walking hopefully gives a person a sense of how a PH patient feels trying to get dressed, or walk up a flight of stairs, or down a short hallway. The walkers had a choice in straws: a short straw, a long one, or a skinny straw. Each had a different degree of difficulty, with the shortest straw being the easiest, and the skinny straw being the hardest.

All the participants registered to do the walk, totalling a little over 100 people. The huge majority of people were athletic students, including almost the entire baseball team! After a wonderful welcome and introduction as to the purpose of the PH walk, everyone went outside and began the marathon. The path of the 6 minute walk was around the student center, near the library, and back to the student center. There were PH facts along the entire path. There was a timer counting down the minutes, and paramedics on stand-by just in case breathing through a straw caused a medical issue for someone! Everyone did well, though, including myself and one other PH patient who had attended!

After the walk, everyone gathered for pizza and drinks, and a little more money was raised by selling tickets for several raffle and door prizes. Eventually I joined Emily on the stage, and thanked the crowd for coming and experiencing what it felt like to have PH, if only for a few minutes. The raffles were given away, and soon the crowd had thinned out. While the event was short and sweet, I hope that it served it's purpose, which was to raise awareness of this disease. I do know that at least the athletes at the school are aware of it now! Hopefully another walk in the future can be planned, and perhaps be a bit bigger and involve more of the community!

Side note: Emily and I, as well as a couple other athletes, were filmed for one of the local news stations a couple days before the walk. We each were asked questions about the walk, why we were doing it, etc. I did share some of what I go through living with PH. Three different segments were aired in the early morning hours the day before the fundraiser. I did learn the next day that a few people had written in about the segments, either concerned because they thought they might have PH, or they have had PH for a long time and didn't know there was a support group in the area. I have reached out to these people since, and I'm just glad that a brief amount of TV airtime at least helped a few people!!