Wednesday, February 25, 2015

Cybercondria and Pulmonary Hypertension Awareness

For this second guest blog post in our series of guest posts from PHA staff members, Jessica Armstrong, PHA’s Early Diagnosis Campaign Manager and a CTEPH patient, looks at an interesting Internet phenomenon called cyberchondria and what it could mean for pulmonary hypertension patients.

Last summer I came across a new term that I'd never heard before: Cyberchondria. As you might guess, it is defined by Wikipedia as “the unfounded escalation of concerns about common symptomology based on review of search results and literature online.” Put simply, a cyberchondriac is that person we all know who gets a cold, googles their symptoms, and becomes convinced they’ve contracted the bubonic plague. Although funny to think about, what's interesting is the sheer number of articles and guides that have become available geared toward advising healthcare providers on how to calm the cyberchondriac patient.

For patients with pulmonary hypertension, this phenomenon of the Internet age comes with a challenge: How does a rare disease patient differentiate him or herself from the cyberchondriacs of the world? The answer is to be informed.

We've already learned the value of educating ourselves, of being good investigators, and in being knowledgeable about our health. We’ve used this knowledge in advocating for ourselves, and frankly, that's how many of us arrived at the point of being diagnosed with pulmonary hypertension. By now most of us have learned that the need for self-advocacy doesn’t stop at diagnosis, which is why so many of us have continued our efforts to learn as much about pulmonary hypertension as we possibly can. This includes learning our WHO group classification, being an active participant in our own health, and hopefully staying organized via the Empowered Patient Toolkit.

Today, with 12 PH therapies available, it becomes more and more likely that we’ll have to deal with other health conditions and concerns in addition to our pulmonary hypertension, and it remains important that we continue to be good self-advocates and good stewards for health, while at the same time not falling into the trap of jumping to extreme conclusions (which is easy to do when you already have one rare disease).

Over the next few weeks, PHA will be launching the newest addition to the Early Diagnosis Campaign, our Patient Self-Advocacy Toolkit at (not live yet). Unlike PHA’s existing Empowered Patient Toolkit, this resource is intended for any patient experiencing unexplained symptoms.

The goal of the Patient Self-Advocacy Toolkit is to provide information and tools for patients who are at that point that many of us were at shortly before we were diagnosed with PH - experiencing unexplained symptoms, uncertain of what’s happening, full of unresolved questions and concerns. Some of these patients may have pulmonary hypertension and some may not, but the goal is really to equip them to figure out what the problem is and to help them be organized and prepared as they embark on the journey toward diagnosis. We hope it will be something you’ll be proud to tell your friends and family about.

And for those of us who have already received our PH diagnosis, we hope this resource will prove a valuable tool as we approach other health concerns along the way. In particular, I’m excited that the Toolkit will provide a guide to finding credible health information online. This resource, which will be found under the ‘Be Informed’ section, will offer tips that will hopefully make it easier to identify good quality resources on the web. We hope that this resource will be something that you continue to utilize not only in regard to diagnosis of new concerns, but also as you continue to learn about your pulmonary hypertension.

And the good news is, if you’ve suffered from cyberchondria in the past, there will soon be a cure.


  1. I was able to self-diagnose PH with the help of Web MD, and I really WAS accused of cyberchondria...until my heart went into congestive failure, and I had to be hospitalized with a "mystery disease". Not surprised to find that, yes, I DO have PH. Better news, though, was my outcome: I have a treatable variety, and the support of family and the PHA. The web diagnosis was pretty grim, and may have helped my "putting off" seeking medical care, since I was afraid of what I'd find. Still, I think having information at our fingertips is only a good development.

  2. I started getting short of breath upon climbing stairs and was really had Pulmonary hypertension -- my sister has the disease and I know the symptoms. a local cardiolog with PH and I was freaking out! However, she diagnosed through an echo cardiogram and never requested a right heart catheterization. Long story short: my symptoms were related to allergies

  3. I recently had a right heart cath to confirm a diagnosis of mild PH. I have mitral valve disease (surgery 9 years ago to repair) and my cardiologist has always dismissed PH as my heart "healing" after valve surgery. For 9 years? Come on! I went looking for old reports, and a previous heart cath from 4 years ago also showed mild PH. I am following up with my cardio next week, and I think it's time we start treating it.