Teens Raise Awareness

Support for the PH community comes in many forms, from many people. Patients, siblings, parents and friends all contribute to the fight to raise awareness about PH and find a cure. Read on for some ways that young people are helping the cause.

Camille, a PH patient, is currently attending college

Two years ago I was approached by Children Special Services to participate in a study conducted by Michigan State’s first-year medical school students. The study entailed meeting with two first-year medical students about once every two months. We talked about my condition, how I live my life and my medical treatment. The two medical students were very nice and very interested in the treatment of pulmonary hypertension and the lifestyle that comes with living with it.

This is something I still do today, and I love doing it. It helps me educate first-year med students and spread the word about PH in my own community. My hope is that one of the medical students may graduate from medical school and want to specialize in the treatment of pulmonary hypertension and further the research for a cure.

From Spring 2011 Pathlight.

Cristiana’s family has lost three members to PH, including her father and grandfather

I am in my high school Med-Sci group [Medical Science] (pictured right) and I actually love it! I had the idea to sell the periwinkle PHA “Empowered by Hope” bracelets [to raise money for PHA]. I presented it to the head of Med-Sci and another teacher and they both loved it!

We made $150 by the second day and continued selling them until March. We allowed the students in Med-Sci to sell five bracelets at a time and for each set of five bracelets sold, they earn one hour of community service. I am the project manager, and we are selling the bracelets for $2 and handing out the small green PHA informational cards with each bracelet.

From Spring 2011 Pathlight.

Haley Lynn is a 19-year-old PH patient

My symptoms of pulmonary hypertension started when I was fairly young. I knew something was wrong, but when I was in school there wasn’t any education on things such as heart and lung issues. You were just weird for not being able to breathe. Since PH is something that goes undiagnosed for years, it’s important that parents are aware of what could be wrong with their children’s bodies. Having trouble breathing is a common problem that branches off in many directions. It takes a lot for parents and even doctors to look into these symptoms.

Haley Lynn, PH Teen, taught her Pre-K class about PH

Since I’m earning my degree in education, I want to really try to raise as much awareness as I can about PH and let parents of my students be very aware of this disease I suffer from and how their kids could be suffering too. I knew I was different in school and I want to make sure children are not suffering silently anymore. So I taught my Pre-K class about PH! We broke the concepts down very simply and explained what lungs are. Then we hung PH coloring papers in the halls for our other teachers and staff members to see as well.

I cannot wait to keep raising awareness. Even though these four and five year olds didn’t comprehend PH much, I got my point across with parents and faculty. These simple coloring pages with lungs were just the start.

November 2011.

Nicole is a 16-year-old PH patient

Every year at school I am assigned a science project to do. I wanted to educate people about pulmonary hypertension, so I did a project on it. The first part of the project was a background paper, which is basically a short research paper. I did that on PH, and I used PHA’s Pulmonary Hypertension: A Patient’s Survival Guide as a main source. The second part of the project is the actual experiment. It pertained to the effects of sleep (or lack thereof) on a chronically ill child. I would stay up late at night, and starting at midnight, would add 30-minute increments every night and wake up at 10:00 every morning. I did this for five days. When I woke up, I would check my blood pressure and oxygen saturation levels. My experiment came up inconclusive, as the data I collected was very erratic.

From Spring 2011 Pathlight.

Savanha is the older sister of a PH patient

“I have always wanted to be a cardiologist… I hope some day to find a cure for PH and never see any one go through what my family and PH friends do.” – Savanha

This year my soccer team puckered up 4 PH. It was great to know that our teamwork was not only on the field. Some teammates and I also attend a club called c3. At the club, we talked about puckering up for PH and got 30 more puckers.

soccer team puckered up 4 PHLast year for my birthday, I asked for donations for PHA and we raised more than $300. All of this also got in the newspaper and spread more awareness.

This year for my birthday, my friends and I are planning to raise awareness for PH and ask for donations again. My friends Lexi and Kristen have joined with me on this. Kristen is in Girl Scouts and she went to her troop and got them to pucker up for PH. She also had some of her brother’s friends pucker up too. Lexie did a school report; she called and asked me all about PH and what it is like to have a sister with PH.

From Spring 2011 Pathlight.

Matt’s best friend, Ian, has PH

When my best friend Iain was 5, he was diagnosed with pulmonary hypertension. Right around that time I was heading up to Nepal for my first mountain climbing experience. I visited a hospital there where they were doing pulmonary testing, and I started to realize what Iain was going through. Climbing helped me experience what Iain has felt through PH – it’s one of the only sports you can do that. I choose to do high altitude mountaineering, and it’s like Iain has to do it 24/7.

When I was 12, I wanted to do a climb more focused toward Iain, so we came up with the idea to do fourteen 14,000-foot peaks in 14 days. Then we decided to amp things up and reach the highest point in each state in under 50 days. We raised over $20,000 for PH through these climbs.

[While planning these climbs] I started realizing that a lot of people were getting interested in my climbing, and that I could direct this attention towards Iain to inspire doctors to research a cure for PH. After I did my first interview, I started getting emails from other people with PH – they said that before this, they had never been able to easily explain PH to their family or friends, and now they could actually explain and pinpoint what they were feeling all the time [because I had compared it to mountain climbing in my interview]. That was one of the most amazing parts.

Want to share how you are raising awareness? Tell us what you’re doing by emailing gro.noitaicossAHP@sneeT.

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