After being diagnosed with pulmonary arterial hypertension (PAH) and heart failure at 28 years old, Gerry Langan dedicated her life to becoming a patient advocate.
Can you share your journey leading up to your PAH diagnosis and how it impacted your life?
I was diagnosed about a year after I had our twin boys. We had moved from North Carolina to Colorado, which is at a high altitude. I had always lived in North Carolina, so I didn’t realize how much the altitude would affect me.
Initially, my symptoms looked like altitude sickness or postpartum issues. Isolated, each symptom seemed explainable. However, as they started to compound, it became clear something was really wrong. I was extremely tired, could barely walk, was retaining a lot of fluid, and had trouble breathing. Separately, these things seemed manageable, but together they painted a much bigger picture.
I started gaining a lot of weight, and as someone with a background in nursing school, I knew that rapid weight gain was a red flag. I also had intense swelling in my legs and ankles. I went to the doctor, thinking I might be pregnant, but I wasn’t. Less than a week later, I ended up in the emergency room, where they diagnosed me with heart failure.
The heart failure was secondary to PAH. By the time I was diagnosed, my PAH was so advanced that it had caused severe heart failure. Being a new mom, a new wife, and a military wife all at once was overwhelming. We were stationed in Colorado, far from our families in North and South Carolina. It was a lot to handle.
The diagnosis was life-changing. After seeing a specialist, I was rediagnosed and had to start treatment all over again when we moved to a different state three weeks later. Adjusting to a new medical team and treatment plan was challenging. At the time, everything felt so reactive. We didn’t have much time to process how extreme the situation was — we just had to keep going. In the military, everything is go, go, go, and this was no different. It was a whirlwind, and looking back, it feels almost surreal how much happened so quickly.
What does a typical day look like for you while managing PAH? How do you balance your health and your role as an influencer?
It’s funny because this isn’t what I set out to do when I was diagnosed. I often share this story because it’s so meaningful to me. When I was in the hospital for two weeks after my diagnosis, one of the doctors came in and told me about another woman who lived nearby. She was around my age, had a similar story, her kids were the same age as mine, and she was on the same treatment. They had told her about me, and she wanted to meet me.
She came to the hospital, and meeting her was incredible. She was so normal, and at a time when everything felt chaotic, I couldn’t imagine what normal life could look like. She helped me see myself beyond the four walls of the hospital. Being there alone — since my husband was with the kids — made it hard to process everything, but she gave me a picture of what life could be like and offered so much hope.
I often say that meeting her made a huge difference in my mental health. She showed me that life could go on, even with this diagnosis. When I started sharing my story online and becoming an influencer, I thought about how she made me feel. It’s funny because she doesn’t even have social media and probably doesn’t know how much I talk about her, but she was a huge part of my journey.
Sharing my story became cathartic for me. I’m an external processor, and journaling online felt natural. When I started sharing, people would come to my page and tell me they’d never seen someone like me. Their encouragement kept me going.
Being an influencer in this space is very different from other types of influencers. My life now revolves around being a mom, a wife, and managing my treatments. I spend a lot of time taking care of my body, balancing medications, and dealing with their side effects. What I share online isn’t curated or glamorous — it’s just my real life. Whether it’s dealing with an infected site or recovering from a heart catheterization, I’m just documenting what I have to do.
It’s funny because my viral videos are often about the most mundane things to me. I’m not planning outfits or creating elaborate content; I’m just sharing my reality. Even though being an influencer can be exhausting, the connection with others and the chance to inspire someone like that woman inspired me make it all worthwhile.
How do you stay positive and motivated while managing the physical and emotional challenges of living with a rare disease?
There’s so much emotional baggage that comes with this journey. It’s funny because I’m really good at compartmentalizing most of the time. I just put those emotions in a box and tuck them away. My best friend, who’s a therapist, would probably say that’s not the healthiest approach, but it works for me —most of the time.
Interestingly, most of my friends are therapists, which has been a blessing. I’m a verbal processor, so I often call them when I’m going through something, and they help me sort it out. My faith is also a really big part of my journey. I talk about it all the time because, honestly, I wouldn’t be where I am mentally if I didn’t have a strong foundation in my faith. It helps me stay positive and grounded.
I joke that I’m an unofficial client for my best friend, the therapist. I don’t always have a lot of emotions, but when I do, they’re big. That said, I’m not someone who gets bogged down by emotions in the moment. I’m a doer. When there’s something to be done, I focus on getting it done and save the emotions for later.
Thankfully, my friends hold space for me when those emotions finally surface, which is really nice. However, for the most part, I stay rooted in my faith and my community. They give me the support and space I need to process things when I’m ready.
Are there any misconceptions about PAH that you aim to dispel through your content?
Dealing with a rare disease like mine comes with a lot of challenges, especially when it comes to educating people about it. For one thing, my disease is extremely rare. People often come to my page thinking they might have it, and while I try to be sensitive to that possibility, it’s important to emphasize how rare it actually is. It’s not commonly diagnosed, so in many cases, it might turn out to be something else entirely.
Another source of confusion is pulmonary hypertension (PH). People sometimes confuse it with regular hypertension, which is much more common. I’ll get comments like, “Oh, you can just take medication and live a long life,” and while that’s true for regular hypertension, it’s not the case for what I have. My condition, PAH, is a type of PH that’s even rarer.
It doesn’t help that PH is often used as a catch-all term. Technically, PH is the broader category, with subtypes like PAH, which is what I have. PAH is a pulmonary (lung) disease, not a heart disease, although it can cause heart issues. This leads to confusion. People ask why I’m not seeing a cardiologist when my primary doctor is a pulmonologist, as the root issue lies in my lungs.
My PAH is idiopathic, meaning there’s no known cause, which makes it even rarer. Explaining this can be exhausting: the distinction between heart and lung diseases, the subcategories of PH, and why I use the term PH instead of PAH for simplicity. It’s a lot to unpack, and I sometimes feel like my own messaging adds to the confusion.
Then there’s the practical side of living with an invisible illness. For example, I wear a pump for life-sustaining medication. When I go through airport security, I don’t remove it, as it’s critical for my health.
Because my condition is invisible, people often don’t realize the challenges I face. For instance, I have a handicap pass because placing a new pump site can cause intense pain for up to 10 days. During that time, walking can be unbearable, especially if the site is in my hip. Yet, from the outside, I may look fine, which is a common struggle for those with invisible illnesses.
I think our society places too much emphasis on the idea that you have to “see it to believe it,” but that’s simply not true when it comes to rare diseases — or many health conditions, for that matter. This mindset makes even normal, everyday interactions challenging. It’s a never-ending cycle of explaining, educating, and trying to live with the daily realities of a rare and misunderstood disease.
What advice would you give to someone recently diagnosed with a rare disease or their loved ones?
I would say it’s essential to show grace — not just to yourself but also to others. Learning and adjusting to something as complex and out of the ordinary as a rare disease takes time.
Rare diseases, like PAH, can be incredibly difficult to navigate. Even people who have been diagnosed for years often still struggle to fully understand their condition. That’s why you need to be patient with yourself. This is a learning process. At the same time, the people around you are also learning and adjusting, and they may need grace, too.
One thing I often remind my friends who are newly diagnosed is that we sometimes expect people to react in a certain way, and we feel disappointed when they don’t. But it’s important to remember that those closest to us are also going through their own grieving processes. It might sound strange, but even though you’re the one diagnosed, your loved ones are grieving, too.
For example, my husband had to grieve the life we thought we’d have and adjust to a new reality with a wife who is now living with a rare disease. Someday, my kids will go through their own grieving process when they fully understand that their mom is sick. We don’t always hold enough space for the emotional journey that others experience alongside us, and that lack of grace can make everything harder.
For anyone diagnosed with PAH specifically, I cannot stress enough the importance of seeing a specialist at an accredited center. Not every doctor understands how to treat this rare condition, even if they claim to be a specialist. I’ve experienced poor care — care that almost cost me my life — because the doctors weren’t truly equipped to handle my condition.
If you’ve recently been diagnosed, prioritize finding an accredited center and seeing one of the specialists there. It doesn’t matter how far you have to travel — it could make all the difference in your care and your life.
What are your hopes for the future in terms of awareness, treatment, or personal goals?
I want to keep helping people through my content. For example, I know a woman who was diagnosed with the same condition I have after seeing an Instagram Reel I posted a couple of years ago. She had a very serious case, but thanks to that post, she sought help and got diagnosed. I’ve even met her in person now, and she’s doing really well. That’s been so cool to witness.
Right now, my main focus is being present for my kids. They’re growing up so fast, and I want to make sure I’m there for them. This disease is progressive, and while I’m doing better thanks to a clinical trial and advancements in medical care, there are no guarantees. I want to cherish every moment with my family. That’s why I take the whole month of December off from social media — to be fully present in my real life. It’s important to me to disconnect and focus on what matters most.
As for my health, my goal is to be cured. I want to get off the pump, and I know my doctor will probably roll his eyes if he hears this, but we’ve been working toward that goal. Unfortunately, it’s not a reality right now, and it was a bit disappointing when I got that news a few weeks ago. But I have to remind myself that I feel really good overall and am living a nearly normal life — minus the doctor’s appointments and treatments, of course. I’m thankful for that.
Next year, I have some exciting goals. I just hit 50,000 followers, and I’m aiming for 100,000. I also want to continue speaking at conferences. Last year, I spoke at eight, and this year, I toned it down to six. I already have one lined up for April, and I’m looking forward to more opportunities to speak and connect with people in real life.
