Allyson Manchester was a seemingly healthy teenager, active in sports and her high school color guard, when she began experiencing chronic ear infections in late 2014. What Allyson, her parents and even her doctors didn’t realize at the time was that these were the first signs of a more serious disease.
Just five months after her ear infections healed, the soreness in her legs began. Despite Allyson’s on-the-go lifestyle, doctors attributed this pain to her not being active enough. As Allyson’s pain and fatigue intensified and breathing became labored, her mom reacted to her ‘mother’s intuition’ and took Allyson to an emergency room. They were later discharged from the ER without a diagnosis, other than that Allyson had become anemic.
“We were lost,” said Steve and Patti Manchester, Allyson’s parents.
“Seeing my child deteriorating in front of me and not knowing why was the most difficult thing I have ever faced,” Steve said.
Finding answers at CHoR
It was shortly thereafter that they received a call from one of Allyson’s physicians. Her blood work had come back positive for antineutrophil cytoplasmic antibodies (ANCA), which can be a sign of a number of autoimmune disorders. The family immediately hopped in the car and made the drive from their home in Fredericksburg to CHoR, where Allyson was admitted on July 19, 2015.
“Over the next four grueling days we saw Allyson continue to decline as multiple specialty doctors tried to figure out the cause. Allyson underwent blood transfusions, many tests and bone marrow and kidney biopsies,” said the Manchesters.
On July 23, after just a few days at CHoR, the nephrology team was able to pinpoint a diagnosis – Wegener’s Granulomatosis.
“Wegener’s is characterized by inflammation in the tissues and blood vessels, which can damage the organs if not managed,” said Dr. Timothy Bunchman, chief of nephrology at CHoR. “Symptoms often begin in the respiratory tract, as they did with Allyson, and then progress to fatigue, pain and inflammation throughout the body. It’s a rare disease and the cause is unknown.”
Although there is no cure for Wegener’s, Allyson sees a team of CHoR specialists who work together to find the right balance of treatment and help her manage the effects. In addition to the expertise of Dr. Bunchman and the nephrology team, Allyson’s care includes ENT, pulmonary medicine and respiratory therapy services. The Manchesters are particularly grateful for Jules Goble, RN as well, whom they describe as “an angel.” Goble helps them coordinate Allyson’s many appointments with her different specialists and offers ongoing support and encouragement.
Care close to home
The availability of CHoR’s nationally ranked outpatient specialty care close to home in Fredericksburg has been another convenience for the family. The new Fredericksburg Multispecialty Center is four times larger and just four steps away from the old Fredericksburg center. From neurology and orthopaedics to cardiology and x-rays, specialty care close to come means less time in the car and away from school, and more time for kids to just be kids. In addition to seeing her providers, Allyson can get lab work done in the newly expanded center, making it easier than ever for her team to stay on top of her condition and care.
Inspired to care for others
Allyson’s feeling a lot better these days, though she continues to battle the pain, fatigue and obstacles that come with her disease. A true fighter, she forges ahead with great strength. She is currently a high school senior and enrolled in a medical assistant certification program, the first step in achieving her goal of becoming a labor and delivery nurse.
The family is hoping that Allyson’s disease will stay in remission and that someday a cure will be discovered. For now they’re living their “new normal,” grateful to have their CHoR team beside them.
“Allyson is everything to us. She has taken on a terrible disease and keeps positive despite the treatments and all of the medications she must take. She is a beautiful young lady with greater strength than anyone we know,” the Manchesters said proudly.