Special Events Stories & PHOTOS

PHood PHight Against PH House Parties
California, August 2010

Meet Denise Bradby, PH patient and organizer of PHood PHight Against PH. Denise uses her love of cooking to positively redefine her lifestyle and to give back to the PH community.

Denise Bradby
Learn more about
PHood PHight against PH

I was diagnosed 4 years ago, just before Thanksgiving. After a day of skiing with friends in January of 2004, I felt something “wasn’t right,” but wrote it off as not having skied the season before. For the next several weeks, I had trouble breathing while exercising or walking hills, and, like many of us, chalked it up to being out of shape. After several work-related trips when I had trouble removing my luggage from airplane overhead bins and bustling to the gateway, I knew something was definitely wrong.

My primary care physician ordered a number of tests, which took the entire summer to schedule and complete. Each time, he’d provide me with negative results, saying, “Well, you don’t have [cancer/asthma/fill in the blank].” I never knew so many things could go wrong with a body! To his credit, after some diseases were rejected, he suspected PH, and sent me to a specialist, who ordered the right heart catheterization confirming the suspicion.

Needless to say, this condition has drastically affected my lifestyle. I am on oxygen to a degree that I can no longer fly. So, I no longer travel for my job, but still manage to work 30 hours per week, thanks to a re-assessment of my responsibilities. No SCUBA diving, which I used to do with absolute passion. No skiing—even if I could deal with the altitude, I wouldn’t have the energy. However, my sister has researched West Coast parks with wheelchair accessible trails, which we do together (slowly), so I’ve been able to continue my photography. She moved her wedding location from the mountains of Colorado to coastal Bodega Bay for my benefit. Christmas no longer happens at my mother’s house in Virginia, but rather, the whole family comes to see me. And, frankly, I have other loves which don’t require lots of activity — jewelry making; painting, decorating, and making clothes; and cooking.

I am constantly touched by the good will and concern people show me. The PHood PHights were a definite highlight of 2010 and pointed out people’s capacity to give. And, they definitely served my need to give back to PHA for being a resource in those early, dark days when I had no idea what was going on. The funds I raised will hopefully decrease the time in which we find better meds and a cure.

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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.