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.

Wednesday, February 11, 2015

Let's Work Together to Advance the PH Cause

Over the next several weeks, I have invited PHA staff to offer guest blog posts about the work they are doing on behalf of the PH community. This first guest post in the series comes from Kim Lamon-Loperfido, PHA’s Patient & Caregiver Services Manager. Kim coordinates the Tom Lantos Innovation in Community Service Awards, and since its launch six years ago, the program has held true to the goals of supporting good ideas that can make a difference to the PH community. The Lantos Grants help patients and family members bring those ideas to reality for the betterment of all​.

Carmen Lozada-Bruno (right) received a
Lantos grant to distribute Spanish language
posters in Puerto Rico with information on
symptoms, diagnosis and the causes of PH.
I’m looking forward to another successful year with the Tom Lantos Innovation in Community Service Awards program this spring. This program allows members of the PH Community to fund and bring into reality their ideas. Last year we had 25 applicants and 13 funded projects.

Some fabulous projects came from 2014 like Brittany Evans, who along with the Generation Hope advisory board, created notepads printed with PHA’s most important web links for both patients and healthcare professionals. Her first distribution of this project took place at one of the healthcare professional meetings at PHA’s 2014 International PH Conference. Another project by Carmen Lozada-Bruno of Puerto Rico involved distributing Spanish language posters with information on symptoms, diagnosis and the cause of PH across Puerto Rico’s pharmacies, emergency rooms, hospitals and government offices. She received nothing but gratitude and positive feedback throughout the process.

I have had conversations with several community members who have experienced the spark of inspiration, but aren’t quite sure how to turn that spark into a full project for their application. Through these conversations, we have explored the primary goal they are trying to work toward, and from there, we’ve filled in details on how they can reach that goal. I’ve encouraged them and I encourage you to watch our helpful webinar on the process, which takes you from brainstorm to application and, finally, to successful project implementation. But I’m also here to help through any part of the process, and I can connect you with previous winners who are more than happy to mentor you in the process.

This program is now in its sixth year of funding projects to advance our shared cause. It provides grants of up to $5,000 each, and both domestic and international applications are welcome.

Projects over the past five years have raised awareness of PH, created PH resources, and educated others about PH. Those wishing to apply for funding should know their projects can also replicate the efforts from previous Lantos Awards, for example introducing a project to a new audience or adding a new component.

The grant program is named for the late Rep. Tom Lantos, a longtime congressman from California who was the original sponsor of our bill in Congress after his granddaughter was diagnosed with PH.

For more information or for help with your application, please reach out to I am so excited to work with you as you turn that spark of inspiration into a full-blown project to advance the PH cause. Although applications are due by March 25, 2015 – let’s chat today!