Publisher's Pick: Search for a cure unites families, community
Six years ago, I was so new to the community that I was unaware of many community events that now have become fixtures on my annual calendar.
Two years ago, my publisher antennae detected an intriguing fundraiser. Alas, my dance card was full on that particular date, committed to some other community event. I vowed that could not happen again.
Months ago, I made it known that when the date was announced for the bi-annual local benefit for the Pulmonary Hypertension Association, Sheryl and I would make plans to be there. And there we were at the Kahler Grand Ballroom a couple of Saturday nights ago.
So, you ask, what made attending the PHA event so important to me? Well, for one, Dr. Michael McGoon and his wife, Bonnie, were reputed to produce — with the help of a clever planning committee — one of the most fun and generous local events held for a good cause.
Additionally, I felt a huge hankering to observe one of this community's cleverest cusses in action as master of ceremonies. That person happens to be one of my employees, Rochester magazine editor Steve Lange. I make it a point to support PB employees when they volunteer for a good cause.
The entire Lange clan was out in force. Wife Lindy (a favorite PB columnist) rushed hither and yon, doing what gala volunteers must do as an event unfolds. At her heels most often were the three Lange children dressed up and adorable. (Sorry, Henry. Sheryl said you were adorable.)
Their role was to stand proud and pout hugely at every table until all who could, would make a donation to fund patient support and research for a cure to pulmonary hypertension. The Lange youngsters performed their duty very well.
What is PH?
Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels to become life-threatening.
Symptoms of pulmonary hypertension include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. Common causes of pulmonary hypertension include breathing disorders such as emphysema and pulmonary fibrosis, as well as diseases of the left side of the heart.
Pulmonary hypertension is frequently misdiagnosed and often has progressed to a late stage by the time it is accurately diagnosed. Pulmonary hypertension remains incurable, but treatments now are available that significantly increase activity capacity, reduce symptoms and improve prognosis.
The local PHA benefit, "Reach for the Stars," is very important support to patients with pulmonary hypertension and to those involved with their care. Donations are directed to research for improved treatment and ultimately to a long-sought cure.
One family's journey
While meandering the silent auction items, I struck up a conversation with a dignified-looking gentleman, a person unknown to me. When I asked Eric Skuldt about his connection to the PHA event, Eric quietly mentioned his young granddaughter was diagnosed with PH.
That brief response was far from the whole story — quite a grand story — made known to all attendees, about 350, later that evening. Here's the gist of one family's journey and the importance of PHA for research and patient support.
In 2007, the Dean Skuldt family of Arlington Heights, Ill., stopped at a grocery store on the way home. Cordelia, age 4, suddenly cried, "Mommy, I don't feel good!" She had turned white and had started shaking as she clutched her chest.
Mom Juliet knew immediately something awful was happening. Terrified, she and husband Dean rushed their young daughter to the hospital. Cordelia spent nearly the next two months in the hospital before she was diagnosed with pulmonary hypertension.
Dean and Juliet began to research PH online to find answers to questions. "The initial diagnosis was grim," Juliet said. "PHA's website was ... a wealth of information on PH."
Later, after Cordelia stabilized, PHA's resources for families became very helpful for the Skuldts. The family also has a strong support system of other family and friends who have helped them to adjust to their "new normal."
Juliet describes PH as a "shaping force" for both her daughters. She says, "Both girls have taken on more adult concerns than kids their own age who haven't experienced these events."
More than 300 miles away, here in Rochester, Cordelia's grandparents, Eric and Jan, also began fighting back against PH. Eric, a retired IBM engineer, and Jan, a retired school teacher, stay active through community volunteering and working part-time teaching adults with disabilities. Last year, Jan connected with McGoon, a doctor at Mayo Clinic, about ways to get more involved with PHA.
Both generations of Skuldts are inspired to get involved by the support they've received from Cordelia's doctors and the growth they see in Cordelia through PH research and PHA. The Skuldt families, both in Illinois and Minnesota, are making a huge difference in the fight against PH just by getting involved and asking, "What can we do to help?"
Three weeks ago, I didn't know anything about PH. Now that I do, I am moved to support PH research with this column and with a donation.
I also didn't know how doggone amusing Steve Lange can be as an emcee.
Randy Chapman is publisher of the Post-Bulletin. He welcomes feedback to his column at firstname.lastname@example.org
To learn more about pulmonary hypertension and to make a donation for research, go online at phassociation.org