Abbie Pancoast Vollmar celebrated her 40th birthday on May 1, 2017. Normally, that would be a mile marker for anyone, but not that big of a deal. For Vollmar, this milestone is much more significant because she has cystic fibrosis (CF). Most CF patients have a median lifespan of 38 years old, so Abbie’s 40th is more than a blessing, it’s a real cause for celebration.
According to the Cystic Fibrosis Foundation, CF is a genetic disease that affects about 30,000 people in the United States and 70,000 people worldwide. It is most prevalent in the Caucasian population, occurring in one of every 3,300 live births. Caused by a defective gene, CF creates a protein product which produces an unusually thick, sticky mucus. This mucus builds inside the lungs where it triggers life-threatening infections. It also distresses the digestive and reproductive systems of those affected by CF. Much research still needs to be done to find a cure.
Vollmar was born at HSHS Good Shepherd Hospital, then known as Shelby Memorial Hospital. A nurse noticed something peculiar about her and alerted the attending doctor. Bob Pancoast, Vollmar’s father, said he would never forget the doctor saying, “If this is cystic fibrosis, she is likely to live only a short time.”
This statement struck fear into her parents’ hearts, and they immediately sought help. Her CF diagnosis was confirmed at St. Louis Children’s Hospital. At only a few days old, she was the youngest child ever to be diagnosed with CF. Pancoast said, “While the doctor probably shouldn’t have presented it that way, it was actually a gift. The seriousness of this came home to us, and we realized we had to be aggressive with her treatment. I think if we hadn’t been so scared, we may have missed a step that could have cost her.”
Vollmar’s norm is much different than anyone else’s. The disease complicates her daily life. When Vollmar wakes in the morning, her first duty is to take a 30-minute nebulizer breathing treatment with drugs designed to open her clogged lung passages. Throughout her nebulizer treatment, she wears a vest which provides percussion to break the sticky mucus build-up in her lungs. This vest treatment lasts for 45-minutes. She does this nebulizer and vest treatment three times daily.
She must also take handfuls of special enzyme pills to aid in her digestion before eating. Gaining weight is very difficult for those with CF because the sticky mucus throughout their digestion systems prevents their bodies from gleaning proper nutrition from their food. In time, the mucus also causes diabetes in most CF survivors. Vollmar has diabetes.
CF also causes early osteoporosis. Because exercising helps curb this disease, Vollmar works out for an hour of group exercise a day to combat bone loss.
However, there is certainly light at the end of the CF tunnel. When asked how Vollmar is coping, she said, “If someone asked me to summarize 2017 (thus far) in one word, it would be hopeful. While nothing has changed significantly for me personally in my day to day life and challenges of living with cystic fibrosis, a lot is changing in the landscape of CF research. We are on the cusp of some potentially life-altering medications being made available for a majority of the CF population in the next few years. The treatment for most of those with CF continues to be a Band-Aid®, attempting to manage the symptoms but not correcting the problem.
“There are combination drugs currently in clinical trials that have the potential to help a much greater number of those with CF and are treating the underlying deficiency with this disease,” she continued. “I see so much progress underway, and I am living in a time where our specific gene mutations are being explored and understood which will hopefully lead the way to a cure for me and so many others with CF.”
“The dreams of the parents who first started the CF Foundation more than 60 years ago are being realized step by step, and we are inspired to continue our work until all people with CF have the chance they deserve for longer, healthier lives,” said Preston W. Campbell, III, MD, president and CEO of the Cystic Fibrosis Foundation.
Vollmar said, “I am certainly grateful for the many medications to address the symptoms that would not have been possible without the support of communities like ours, but I think everyone would agree that our ultimate mission is to cure this disease, and we are getting close. But we aren't there yet. We are all in this to end it, and I'm so proud of Shelby County in the vital role they have played and continue to play in making CF stand for ‘cure found’. With grateful tears in my eyes, my husband and I sent our 5-year-old twin daughters off to kindergarten this fall. But I want to send them off to college, too. Thank you for making this a possibility! On behalf of all of those living with the struggles of this disease daily, we are grateful, and we are hopeful.”
To support Abbie and others like her in their daily fight with CF, and to help fund research for a cure, HSHS Good Shepherd Hospital will sponsor the sixth annual Shelby County Cystic Fibrosis Event on Saturday, September 30. The event will take place at Forest Park in Shelbyville. The event is two-fold this year with Abbie’s Ride and the Great Strides Walk. Registration for the walk and the ride begin at 7:30 a.m. and the events start at 9:30 a.m., with both parts concluding at 11 a.m.
Abbie’s Ride is a bike-a-thon for children and adults. There will also be a trike-a-thon for preschoolers and those who haven’t quite graduated to a two-wheeler. Children who collect at least $25 in donations will receive an event t-shirt. Participants may turn in their donations at the event, and t-shirts will be delivered to those children who meet this goal. Riders will get a lap mark on their numbered bib for each completed lap, and every five laps participants will be entered into a raffle for a prize. There will be two prize categories: donations collected and laps accumulated. Prizes will be awarded to the top two participants who amass the most donations and to the two riders with the most laps. First prize is a $100 gift card from Wal-Mart, and the second prize is a $50 gift card from Wal-Mart for both categories.
The other half of the event will be the Great Strides Walk for Cystic Fibrosis. The walk will occur on the Dacey Trail. The first mile will be dedicated to Meliah Miller as Meliah’s Mile. Meliah Miller was a former Shelby Memorial Hospital colleague who lost her battle to CF at the age of 24. A refreshing water station will be provided at the end of Meliah’s Mile.
To preregister for Abbie’s Ride, sign up for the Great Strides Walk, find out how you can be a sponsor, volunteer your time, or make a financial contribution, please visit shelbycf.org.
About HSHS Good Shepherd Hospital
Since its inception in 1916, HSHS Good Shepherd Hospital in Shelbyville (GSS) has been dedicated to excellence in healthcare for those living and visiting their communities. GSS has accomplished this by providing comprehensive health services and meeting the needs of patients served through their compassionate care, business integrity and community responsibility. GSS provides a 24/7 emergency department that is fully staffed by physicians and highly-trained nurses, and also features inpatient and outpatient services, including a 24-hour laboratory and an imaging department that meets today’s highest standards for diagnostic imaging technology. GSS has an advanced surgery department and an acute inpatient care unit. Dedicated to being a hometown hospital, GSS’ home health and rehabilitation departments are committed to excellence with a team of professional nurses and therapists providing a variety of medical services and rehabilitative therapies, all designed to help patients heal in their own environment. The group of visiting specialists in the outpatient clinic works closely with GSS to help keep the healthcare services local even if a specialized procedure or exam is required. GSS strives to be the first choice for the community’s healthcare needs. For more information about HSHS Good Shepherd Hospital, visit www.hshsgoodshepherd.org.
About Hospital Sisters Health System
Hospital Sisters Health System’s (HSHS) mission is to reveal and embody Christ’s healing love for all people through our high quality Franciscan health care ministry. HSHS provides state-of-the-art health care to our patients and is dedicated to serving all people, especially the most vulnerable, at each of our 15 local systems and physician practices in Illinois (Belleville, Breese, Decatur, Effingham, Greenville, Highland, Litchfield, Shelbyville and Springfield) and Wisconsin (Chippewa Falls, Eau Claire, Oconto Falls, Sheboygan and two in Green Bay). HSHS is sponsored by Hospital Sisters Ministries, and Hospital Sisters of St. Francis is the founding institute. For more information about HSHS, visit www.hshs.org. For more information about Hospital Sisters of St. Francis, visitwww.hospitalsisters.org.