Preview Mode Links will not work in preview mode

I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

To learn more about PH visit phaware® is a 501(c)3 organization. © Copyright 2015. All Rights Reserved.

Generously Supported in part by Actelion Pharmaceuticals US, Inc., Bayer, United Therapeutics Corporation, Acceleron, CVS Health & PhaseBio Pharmaceuticals.

Shannon O'Donnell - phaware® interview 251

May 31, 2019

Shannon O'Donnell was diagnosed with pulmonary hypertension at age 6.  Shannon recorded this interview on the day of her college graduation. She details her PH journey on the eve of her 18 year PH diagnosis anniversary.

My name is Shannon O'Donnell. I have been a PH patient for 18 years, and I am from Boston, Mass.

I was diagnosed at six years old. It'll be 18 years on May 31st. I don't remember much, but there was a lot of restrictions. I couldn't do a lot that my friends were doing, what my cousins were doing. I kind of grew up in a bubble. We didn't know how long my parents would have with me, so I kind of grew up in a bubble with very few friends and very close to family.

My parents tried to give me a normal childhood, but back in the early 2000s, doctors didn't know how long kids would live with pulmonary hypertension, and there wasn't drugs approved for kids in the early 2000s. Now here, 18 years later, I am alive and graduating college tomorrow.

Growing up, I was an arts and crafts nerd, book nerd. When my doctors cleared me to do karate, I ended up going all the way up to second degree black belt. Then [I had] to stop due to the PH progression and joint issues. But toys, books, arts and crafts and the bits of martial arts I got to dabble in were my creative outlets.

I think the first PH patient I met, I want to say was at the Indianapolis [International PH] Conference where I met Kirsten Larson. She was really the first PH patient we met, because our parents had connected. They said, "Hey, this is how our daughter wears her pump. She plays basketball." That kind of pushed my parents to let me do more physical activities, play outside and learn how to ride a bike, learn how to ride a scooter.

I want to say she was a teenager when I met her, maybe early 20s. I kind of felt relieved just watching Kirsten's story and hearing it from her and how just she dealt with playing basketball and how she dealt with growing up with it, because I want to say she was in high school when we met. So just watching her go through high school and college and all that. It was pretty cool just meeting another PH patient.

I'm on a women's group on Facebook, and all of the women complain about going on the CADD [infusion] pump. I'm like, "It fits into almost every designer bag in existence." I'm like, "Just use it as an excuse to whoever you're living with." Say, "Hey, I'm going to go buy myself a nice bag." That's what I tell them. Use it as an excuse. Go buy yourself one of those nice Coach bags, especially the bigger ones. They fit CADD pump really well. A lot of people have written me back saying, "Oh my God, that really cheered me up. I'm going to go do that now."

I've had the pleasure of attending The Hole in the Wall Gang Camp in Ashford, Connecticut. They don't just accept PH kids. They accept all chronic illnesses. Paul Newman created it as a safe place for all those kids, including myself. I will say this to calm the parents down who are going, "Oh my God, this child went to a camp in the middle of nowhere in New England." No, there are trained medical staff 24/7 onsite. We are in a cabin full with air conditioning, bags, heat. Whatever your child needs they will provide it, and they let them be kids.

I learned how to do so many different arts and crafts. I learned how to develop a love of theater. They have music. They have wood shop. They have everything under the sun you can think of at that camp. It was a pleasure going there. At that camp, because they do have family weekends, you see kids with all different types of illnesses. You just feel like you're one with the crowd, and you make all different types of friends. I know I made all different types of friends with chronic illnesses, different types of cancer. I just felt one with the crowd. I didn't feel different, like if I was in Boston.

So I stayed at home. I went to a community college, so I'm getting my associate's. At first, I thought I wanted to become an x-ray tech, but then as I got closer and started talking to Dean of Medicine at my school, they said, "Oh, we're not sure if you can take the TEAS test in the disability office," which is the Massachusetts exam to get into the x-ray tech program. They said, "No, we would be able to provide you all of your accommodations, but you need to take it with the rest of the group." I did not like that because I felt like some of my rights as someone with a learning disability was being taken away. So I just stuck with the general education concentration that I was already in.

Now I'm finishing up that, and now I'm moving on hopefully to UMass Boston in the fall for creative writing. I have really enjoyed fiction writing for a very long time. In college I have had the opportunity to explore that more, even though my learning disability is concentrated in English specifically. But taking my last two classes, I focused on the creative writing classes I would be taking in the fall and in the future. So I recently took a children's literature class, and I had to write a children's book. So yeah, I want to be an author.

I am a big fan of Ellen DeGeneres in Finding Nemo. The best advice I give to anybody I meet through Generation Hope with this new diagnosis is to just keep swimming and enjoy life, because we don't know how long we're going to have. We don't know how long these therapies are going to work. We are on a rollercoaster ride, and we don't know when we're going to get off of it.

My name is Shannon O'Donnell, and I am aware that I am rare.

Learn more about pulmonary hypertension trials at Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: #phaware #ClinicalTrials @antidote_me