In this episode of Rarely Typical, I sit down with my friend Jenna to talk all things traveling with Pulmonary Arterial Hypertension (PAH). When you live with a rare disease, the idea of traveling can feel overwhelming — from packing medications and managing oxygen, to handling airports and unexpected flares. But over the years, both Jenna and I have learned how to make travel not only doable but genuinely enjoyable again.

We share how our confidence has grown through experience, the lessons we’ve learned the hard way, and how we’ve each adapted our routines so we can continue exploring the world. You’ll hear our best practical tips for preparing for trips, managing hiccups on the go, and setting yourself up for success when things don’t go as planned.

If you’ve ever thought, “I wish I could travel, but my illness makes it too complicated,” this episode will remind you that with the right preparation, intentionality and mindset, it’s absolutely possible.

What You’ll Learn:

* How to prepare for travel with medications, oxygen, and medical equipment

* What to communicate with your doctor before travel

* How experience helps reduce fear and builds travel confidence

* Tips for finding joy and flexibility when things go off-plan

Follow Jenna on Instagram at @travelingwithoutboundaries

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

When you’re first diagnosed—or even when something just feels “off”—your journey often starts in your primary care doctor’s office. But what happens when your primary care provider suspects something more complex and refers you to a specialist? In this episode of Rarely Typical, I sit down with Dr. Peter Hountras and Stacy Hountras, NP, to break down what that process really looks like.

We talk about how and why patients are referred to specialists (in my case a pulmonary arterial hypertension (PAH)) why tests often get repeated when you transition to specialty care, and what you can expect at those first few appointments. For patients and caregivers, this episode offers a clear roadmap to navigating referrals, and for providers, it’s a reminder of how overwhelming this process can feel for patients walking through it for the first time.

If you’ve ever wondered: Why am I seeing another doctor? Why are they redoing my tests? What should I expect from this referral? — this episode will give you clarity and reassurance.

Whether you’re a patient newly referred to a specialist, a caregiver helping someone through the process, or a provider wanting to improve the referral experience, this conversation is filled with practical insights and encouragement.

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

In this episode of Rarely Typical, I sit down with friends in the PAH community, Chelsea + Lisa, to talk about what it really looks like to balance work and Pulmonary Arterial Hypertension. We share candid conversations about the challenges of managing symptoms, juggling frequent doctor’s appointments, and even recovering from surgeries—all while trying to maintain a career.

We dive into the importance of workplace accommodations, the role of flexibility, and how to have honest conversations with employers about your needs. We also share practical advice for others navigating their own careers while managing PAH—reminders that you can still find purpose and meaning in your work, even if it looks different than you first imagined.

Whether you’re newly diagnosed, in the middle of your career, or supporting someone with PAH, this conversation offers both hope and tangible tools for making work more sustainable alongside chronic illness.

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

Seven years ago, what I thought would be a quick trip to the ER turned into a life-changing moment—a diagnosis that would forever alter my life. In this special episode, I’m reflecting on my 7 year diagnosi-versary and the journey that’s unfolded since.

I share how I first stepped into advocacy, what pushed me to use my voice, and the lessons I’ve learned along the way—both about myself and about living with a chronic, life-threatening illness. I also talk openly about facing mortality at a young age, and how answering the question, “What’s your goal?” shaped not only my advocacy but the way I choose to live my life every day.

If you’ve ever wondered why I do what I do, or how I got started doing this, this episode is me sharing my heart with you.

✨ What you’ll hear in this episode:

* Why I started advocating and what advocacy has taught me

* The biggest lessons I’ve learned in 7 years of living with PAH

* How facing mortality gave me clarity on my purpose

* What I’ve discovered about hope, resilience, and legacy

Disclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

What does it look like to choose worship in the middle of your storm? In this episode, I sit down with Brinnae Keathley from Red Rocks Worship to talk about finding joy in the middle of hardship, and how God meets us right in our mess. Brinnae shares her own journey of faith, music, and holding onto hope when circumstances don’t look like what you imagined.

Together, we explore how worship isn’t about pretending everything is perfect, but about bringing our whole selves—pain, questions, and all—before God. This conversation is an encouragement for anyone walking through a difficult season, reminding us that joy can exist alongside grief and that God doesn’t wait for us to be “put together” before He shows up.

What You’ll Learn in This Episode:

* How worship can be a lifeline during times of suffering.

* Why joy isn’t the absence of hardship, but something we can discover in the middle of it.

* Practical ways to feel God in your mess instead of waiting until life feels “cleaned up.”

* The power of honesty, vulnerability, and community in faith.

Resources & Links:

* Follow Red Rocks Worship here.

* Listen to Red Rocks Worship on Spotify or Apple Music.

* Check out Red Rock Worship’s upcoming tour here.

* Connect with me on Instagram: @itsgerrylangan.

In this powerful and deeply personal episode, I sit down with my friend Lisa to share a story that very few people — and even fewer medical professionals — truly understand. Lisa lives with pulmonary arterial hypertension (PAH) and a congenital heart defect, and she faced one of the most high-risk situations imaginable: pregnancy with PAH.

Lisa walks us through her journey, from navigating her congenital heart defect to the moment she learned she was pregnant, and the critical role her PAH pregnancy specialist team played in saving her life and her baby’s. She opens up about the physical toll, the emotional rollercoaster, and the lasting impact on her body and family.

While her story has a happy ending, Lisa is candid about the realities: this is not something she would recommend to others living with PAH because of the immense risks and sacrifices involved. Her honesty offers a rare, unfiltered look at why having the right medical team isn’t just important — it’s the difference between life and death.

If you’ve ever wondered what pregnancy with PAH truly looks like, or why specialized care matters so much in rare diseases, this episode is a must-listen.

Key Takeaways

* Pregnancy with PAH is extremely high-risk and requires a medical team experienced in both PAH and maternal-fetal medicine.

* Specialist care saves lives — Lisa credits her survival (and her baby’s) to her highly skilled, coordinated care team.

* Long-term impact is real — pregnancy can have lasting effects on heart and lung health for people with PAH and can in worst case scenarios result in life-threatening situations for both the mother and the baby.

* Personal choice matters — while Lisa’s story has a positive ending, she stresses that it’s not a path she would recommend due to the risks.

Helpful Links

* Pulmonary Hypertension Association – Pregnancy and PH

* American Heart Association – Congenital Heart Defects

* PAH Resources for Patients

In the season 2 finale of Rarely Typical, I sit down with my friend Shanna, the person who first encouraged me to pursue a clinical trial. With experience in three different trials, Shanna brings wisdom, honesty, and encouragement to the table.

We talk about:

* How her clinical trial experiences shaped her journey with chronic illness

* What to look out for and take notes on when researching trial opportunities

* Why it’s important to fully understand what you’re getting into before committing

* The role of courage, hope, and advocacy when considering trials

Shanna’s story is a reminder that clinical trials aren’t just about research, they’re about real patients, real choices, and real lives. If you’ve ever wondered whether a clinical trial could be right for you, this conversation offers both practical tips and lived experience perspective.

Thank you guys for another amazing season of Rarely Typical!

I will be back on October 3rd with season 3!

Disclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and guest personal experience and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

In this episode of Rarely Typical, I’m pulling back the curtain on my own journey as a participant in the sotatercept (Winrevair) clinical trial for Pulmonary Arterial Hypertension (PAH).

I share what a clinical trial actually is, why it’s such an important step in advancing treatment options, and why the sotatercept trial had the PAH community buzzing with hope. From there, I walk you through my own experience—the excitement, the setbacks, and yes, the exhausting parts too.

It hasn’t all been smooth sailing. There have been hiccups, moments of frustration, and times I questioned if I could keep going. But more than anything, this trial has been life-changing for me, and I want to encourage others to consider participating in research that could change lives—yours and others’.

If you’ve ever wondered what it’s really like to be part of a clinical trial, or you’re curious about what this breakthrough treatment means for the PAH community, this episode is for you.

Listen in to hear:

* What a clinical trial is (and isn’t)

* Why sotatercept is such a big deal in PAH treatment

* The real-world challenges and rewards of participation

* How research can feel exhausting… and still be worth it

* Why I believe in saying “yes” to the opportunity to make a difference

🎧 Listen now and join me as I share one of the most impactful chapters of my PAH journey.

In this episode of Rarely Typical, Gerry sits down with her own PH specialist, Dr. John Moss, to talk all things clinical trials. Together, they unpack the importance of participating in research, how clinical trials work, and the patient-doctor collaboration that makes it all possible.

Dr. Moss shares his insight from years in research and care, and Gerry reflects on how clinical trials—especially Sotatercept (Winrevair)—have drastically changed the trajectory of her life with Pulmonary Arterial Hypertension (PAH).

Whether you're a patient, caregiver, or healthcare provider, this conversation demystifies clinical research and explains why trials should never be a last resort—but instead, a pathway to hope, innovation, and better outcomes.

🔑 Key Takeaways:

* Why clinical trials are essential for rare diseases like PAH

* The impact of patient participation on future treatment options

* What it’s like to be in a clinical trial from both the doctor and patient side

* Breaking the myth that clinical trials are only for the "end of the line"

🔗 Resources Mentioned:

* ClinicalTrials.gov – Find active and recruiting trials

In this honest and deeply relatable episode of Rarely Typical, Gerry is joined by her friend and fellow rare disease mom, Chelsea Price, for a raw conversation about parenting while living with a chronic illness.

Together, they talk about:

* What it looks like to show up as a parent on the hard days

* How disease progression affects energy, routines, and mental load

* The emotional weight of watching your health shift while trying to maintain normalcy for your kids

* Giving yourself permission to parent differently, with grace and flexibility

* How progression can affect you mentally

Chelsea and Gerry open up about the grief and heaviness that can come with declining health, and how they manage expectations—both from themselves and others—while raising children with compassion and joy.

They also touch on the hope that comes from clinical trials, new medications on the horizon, and why advocating for themselves is part of how they fight for their families.

🔑 Key Takeaways:

* Parenting with a chronic illness looks different—but it’s still powerful

* Disease progression can be emotionally and physically exhausting, and it’s okay to grieve

* There’s no one “right” way to be a good parent—especially when you’re navigating health challenges

* Clinical trials aren’t just about patients—they’re about giving families more time, stability, and hope

🔗 Resources Mentioned:

* ClinicalTrials.gov – For patients interested in learning about or joining a clinical trial

* Gerry’s Blog Post on PAH Treatments

* Find Chelsea on Instagram