November is Pulmonary Hypertension Awareness Month. I remember the first November of my son’s diagnosis. My family and I were still in the process of learning about this disease. Awareness to us was explaining to friends and loved ones that my son had a life-threatening, incurable condition.
Exposing this rare disease to others helped us come to terms with the reality of it. People would ask questions that we didn’t know how to answer or comment in ways that left us uncertain as to how to react. This inspired us to do more research and to seek out others in the same situation.
In the beginning, PH awareness required a lot of self-education and building what we call our extended PHamily. It wasn’t about periwinkle ribbons and zebra patterns. It was about making connections and overcoming our own ignorance by inviting others to learn about PH with us.
The first year felt like a decade. By the following November, my son and our family were seasoned survivors, proudly wearing our PH ribbons and explaining with confidence how zebra patterns relate to this rare disease. Doctors are taught, “When you hear hoof beats, think horses not zebras.” PH is a zebra and it took two years for the doctors to see my son’s stripes.
We set up a table in our church hall one weekend during coffee hour and handed out PH informational pamphlets and ribbons, collected cash donations for the PH Association, and answered questions. Our favorite free resource was the PH facts wallet card that describes PH, including common symptoms and risks.
The birth and growth of social media simplified PH awareness efforts and extended them beyond November. It has helped open eyes and pull at heartstrings by providing a medium to share PH stories.
Posting about PH helps educate people about this complicated and sometimes deceptive disease. Sharing the struggles, stories, and pictures of patients flushed by vasodilators and giving off a healthy appearance addresses the confusion of how appearances aren’t always what they seem.
Teaching people to be PH aware helps end assumptions that adults who need supplemental oxygen must have been heavy smokers, or that a person needs a wheelchair to park in a handicapped spot.
Sharing stories of children in hospitals and losing their battles to PH is the most effective response to the comment, “At least it’s not cancer.”
Most importantly, as people read about the experiences, they learn about the PH symptoms, tests, and procedures needed for diagnosis. They learn the value of being followed by a PH specialist and the importance of advocating for one’s own health. You never know, sharing your story and that of your PHamily might help someone reach a diagnosis sooner.
PH awareness is also about fundraising, and social media has provided a means to do that. You can set up a mini-fundraiser for people to donate to a cause or charity of your choosing in celebration of your birthday.
Another favorite of mine to share on social media is the straw challenge. Ask people to pinch their nose with a clothes pin and breath only through a straw as they walk up a flight of stairs. If they are out of breath when they reach the top step, ask them to donate to the PH Association. If anything, they will better understand what being breathless with PH feels like.
This time of year, as people start shopping online for Christmas gifts, AmazonSmile offers an easy way to raise funds for PH. With every eligible purchase, AmazonSmile donates 0.5 percent to the charity of your choice. My family has ours set to donate to the PH Association, and we remind family and friends to do the same.
Since my son’s diagnosis 12 years ago, we have suffered the passing of so many children from PH. I was going to share how many we personally knew or whose stories we followed closely, but I couldn’t bring myself to count past 20. Many were ineligible for transplant, some passed while waiting, and others lost their lives to post-transplant struggles.
My son no longer has PH since his heart and double lung transplant, but advocacy and awareness continue to be of great importance to my family. This November, in remembrance of those we lost and in honor of those still fighting, we will share PH stories, educate, raise funds, and pray for the day when we can finally say, “A cure has been found.”
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.