The PHA Support Group "Scoop"

Fall 2012

PHA support groups are addressing diverse issues, from healthy eating to coping with emotions related to PH. Here’s a sampling of recent activities around the country.

Ever had a craving for something crazy, whether it’s pickled chocolate or fried gummy worms? Minnesota “Twin Cities” had a meeting about eight specific causes of cravings! What’s more? They even had tips for how to overcome those cravings with healthy alternatives.

Minnesota wasn’t the only group to talk about nutrition. Mid-Hudson Valley (N.Y.) and New Orleans had meetings about eating right while managing PH. Similarly, Central Florida, Sheboygan Area (Wis.) and Southern Jersey all invited local medical professionals to speak about foods and drinks that help regulate sodium and fluid intake.

Learning to prepare for emergencies has been on the minds of several groups. Syracuse focused on “adverse events” or medical emergencies like drug side effects and surgery complications with a talk by a PH nurse from Rochester Medical Center.

Tropical Storm Debbie rained on PHA’s International PH Conference in Orlando in June but, had it turned into a hurricane, North Central Florida would have been ready! They brought in a nurse educator to talk about preparing for hurricanes and other natural disasters. Binghamton New York, Lilac City, Lincoln-area groups also hosted speakers on emergency preparedness.

Your lungs, just like your muscles, should always get a little workout. The Flint Saginaw (Mich.) group held a meeting about breathing exercises. The Minn-Ia-Kota (S.D.) group attended a “respiratory rally,” where several speakers addressed major lung issues. Meanwhile, Portland Metro and West Virginia had meetings about other forms of exercise as well.

Where would PH patients be without caregivers? The Santa Barbara group had a great meeting about “finding balance as a caregiver,” making sure the caregiver meets all of his or her needs as well as the patient’s needs. The Newport Beach, Fresno and Puyallup Valley groups also had meetings focusing on caregivers’ roles.

PH directly affects the heart and lungs, but coping with it also influences our mental health. The Raleigh/Durham/Chapel Hill group discussed this question: “How has your life changed since being diagnosed?” Seattle, Des Moines, Milwaukee and NYC’s St. Luke’s brought in speakers to talk with their members about coping with a chronic illness and the anger it can produce.

When you have a condition like PH, traveling can be tough and intimidating. The D.C. Capital Breathers, Midlands S.C. and Nashville groups all hosted meetings about traveling with a chronic illness and the many considerations involved.

Each of us must prepare for end of life issues, whether we have PH or not. The Fort Worth group hosted a discussion about what they need to know about writing a will and hiring an attorney to assist.

Many support groups devote at least one or two meetings a year specifically to the purpose of having new and veteran patients get acquainted. Charm City Exhalers, Houston, Mid-South Area, Mid-Missouri, New Hampshire, UCSF, Tucson, Topeka Area, Tampa Bay, St. Peter’s Hospital and the Puerto Rico groups all held similar meetings.

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.