Wednesday, July 13, 2011

The story of a book...

July 25 will be an important day for PHA.  We will be publishing the new fourth edition of the Patients' Survival Guide.  Watching the work of our volunteer writers and artists, the medical reviewers, led by Dr. Ron Oudiz, and PHA staff, led by Patti Lalley and Amanda Butts, I've been awed by the work that has gone into a major revision and addition to this 300 page patient and family treasure.

In considering about how to celebrate this accomplishment, I can think of no better way than turning to the words of the book's creator (and author of it's first three editions) - Gail Boyer Hayes - who also wrote PHA's history from its founding through 2000 (and, in the case of the Survival Guide, a little bit beyond).

Gail continues to write - novels now - and we thank her for what she began and, as you can see,others jumped in to make possible.  She is another example of the difference a single person, willing to act, can make.

Today, PHA's Survival Guide, has been translated by teams of medical professionals and others from English into Japanese, Chinese, Korean, Spanish, Farsi and other languages.

We hope you enjoy the new fourth edition!


Pulmonary Hypertension: A Patient’s Survival Guide

The Internet age was just dawning and most PH patients still did not have access to it. Even those who did lacked the sort of in-depth, accurate information they needed to cope with their illness and make intelligent decisions about which treatment options to discuss with their doctors. Both PH and its treatments were exceedingly complex. It is quite impossible for a patient with such an illness to remember everything a doctor tells him or her during an office visit, and equally impossible for a doctor to be comprehensive in the time allotted.

PHA decided, therefore, that patients needed a comprehensive reference book they could turn to for reassurance and for guidance.

PPH patient and writer/editor Gail Boyer Hayes (Seattle, WA) wrote the 123-page first edition of

Gail Boyer Hayes
 Pulmonary Hypertension: A Patient’s Survival Guide, which PHA published in 1998. Before she was diagnosed with PPH at the age of 40, Gail had been working as a lawyer in California, Colorado, and Washington, DC. And before that, she had been a book reviewer, magazine and newspaper reporter, short-story writer, and television talk show hostess. For the six years following her decision to write the Survival Guide, the Guide and its updates consumed nearly all of her free time.

The medical consultant was the distinguished Dr. Bruce Brundage. Andrea Rich (the wife of Dr. Stuart Rich) did the medical illustrations. Other PH patients, doctors, nurses, and family members reviewed the book prior to publication to make sure it answered the right questions and explained things in language a layperson could understand.

Chapters included: What is PH?; So How Do I Know It’s Really PH?; What Causes PH?; Treating PH; Tell Me Doc, How Long Do I Have?; Children and PH; Living with PH, and Tedious Paperwork and Legal Matters. Cost of the 123-page Guide to PHA members was $10.00.

Gail was concerned that the Guide not be slanted to curry the favor of any commercial interest. Therefore, she did not turn over the copyright to PHA until she was assured of this. (It turned out not to be an issue; PHA also wanted a Guide that patients could trust.)

The Patient’s Survival Guide was an immediate hit and flew out the door. Olsten provided PHA with $1,500 to include a copy in the new patient packets. Many doctors bought multiple copies to give out to their patients.

Barbara Smith

PH patient Barbara Smith and her husband Vern, residents of Odessa, Florida, who had built up a chain of plumbing, cable, air conditioning, and electric businesses, mailed the Survival Guides and paid for postage out of their own pocket. Barbara was already familiar with PPH before she was diagnosed in 1995, because both her sister Rachel, and her daughter Angela, had died of the disease. When Angela died, she was pregnant with her third child. After Barbara became too ill to handle the mailings herself, the Smiths continued to pay for them. For at least 5 years they also mailed out membership packets, new patient packets, PH pins and cards, and other materials, and paid the postage on them.

Few patients realized the generosity that made their low-cost orders possible. Barbara once said, “I couldn’t figure out why I was still alive after losing my daughter and my sister. The only reason I can think of is to help other people.” Barbara survived until October 2005.

Wednesday, July 6, 2011

Slow Walker...

For the past few weeks, Meghan Tammaro, who manages PHA's international work, has been in touch with Gloria Huanghuan, a PH patient in China.  Gloria is organizing a new PH association there - iSEEK - which she hopes will complement the work being done by her doctor, who founded PHA China.

As you watch the video (begins about 10 seconds in in Chinese with English subtitles), you are watching Gloria and the story of her experiences with PH and in trying to form a non-profit organization to help patients and their families.  What you will see is a segment of a longer film, titled Slow Walker, that she is making to help build awareness of PH and other rare diseases.  The film is applying for the Sundance Documentary Film Program.  We wish this talented young woman much success in sharing her story worldwide.

We also wish China a speedy path in sorting out out its laws and regulations for rare diseases and making it easier for NGO's to register.  What Gloria is doing can only help its citizens with rare diseases such as PH as they are being helped in 51 other nations around the world.