Living with a rare or chronic disease is never easy, as it creates many emotional, financial, physical, and social challenges. One difficult aspect is learning that a particular condition has progressed. How are we supposed to cope with news that our health is getting worse? I face this unfortunate…
Worth the PHight - a Column by Jen Cueva
In August, I had the amazing opportunity to attend the Pulmonary Hypertension Association’s (PHA) International PH Conference in Indianapolis. Meeting newly diagnosed patients and caregivers was a vibrant experience. For many, it was their first time attending such an event, and the energy was contagious. Even the…
Companionship and physical intimacy are universal needs that play an important physical, psychological, emotional, and social role in our lives. But living with a rare condition like pulmonary hypertension (PH) can complicate matters. Intimacy often becomes secondary when I am exhausted, in pain, or short of breath —…
Fear and anxiety are often among the first emotions we experience after being diagnosed with pulmonary hypertension (PH) or other rare and complex diseases. Recently, my therapist asked me, “Did you know that naming your fears is the first step in preventing them from controlling your mind?” Despite having…
Traveling with a rare disease such as pulmonary hypertension (PH) isn’t just about booking flights and hotels; it’s an adventure full of challenges! Once the plans are set, the actual logistics begin. Ensuring that I have all my treatments, preparing for possible emergencies, and navigating the complexities…
As we grow older, making new friends can become more challenging. Add a rare disease like pulmonary hypertension (PH) to the mix and it gets even harder. But five years ago, when I joined Bionews (the parent company of this website) and connected with the fantastic…
“How often do you experience heart palpitations or chest pains?” This question is one of the first I hear every time I have an appointment with my pulmonary hypertension (PH) specialist or other members of my healthcare team. Palpitations, chest pain and tightness, shortness of breath, and…
If you’ve recently been diagnosed with pulmonary hypertension (PH), this column is for you. I’ve been there, and I know what you’re going through. It might feel like everything is a blur as you grapple with the whirlwind of emotions that come with such a devastating…
Do you ever feel like a fraud because of your rare disease? For the past two decades while managing pulmonary hypertension (PH), I’ve battled self-doubt, shame, and feelings of inadequacy. I know I’m not alone. We all face these emotions at different points in life, and through conversations with…
I have pulmonary hypertension (PH), which is difficult to manage, but it doesn’t affect only me. It also affects the people closest to me, including my husband, Manny, who is my rock. Unfortunately, living with a rare disease can strain a marriage at times. When that happens,…
When health issues strike, they can be devastating, turning your world upside down in an instant. You can’t just wish away a rare disease like pulmonary hypertension (PH); its future impact is a daunting unknown. Last week, I had an “aha!” moment with my young adult daughter, Kayla,…
Living with a rare disease like pulmonary hypertension (PH) presents unique challenges. Balancing work, your personal life, and your health can feel overwhelming for both patients and their caregivers. If you find yourself struggling to balance work and life with a rare disease, please know that you’re…
