For 17-year-old Allison Alberts of Sturgeon Bay, Wisconsin, waking up with pain is an everyday occurrence for her. Some days the pain is manageable and can be helped along by a hot shower or a run to loosen up her body. Other days, Allison might struggle to get out of bed and looks to her father, Jamie, to help her walk or give her joints a comforting massage.
“There are many days I wish I could be normal, let alone feel normal for a day – a day without any pain, “says Allison. “But complaining does nothing. Complaining won’t take away the pain and complaining won’t allow my fingers to look normal. The way I go about my day is to let my arthritis and my body know that they will not stop me.”
When Allison was 12 years old and in the sixth grade, she suddenly got a “bubbly” sensation in both of her hands. The pain persisted for a few weeks and her mother, Amy, took Allison to see their pediatrician, who referred them to a pediatric neurologist, Dr. Terence Edgar in Green Bay, WI. Dr. Edgar diagnosed Allison with what he described as “the most extreme case of carpal tunnel” he had seen in a child of her age. Allison would go through two surgeries on her hands to alleviate her carpal tunnel.
However, Allison kept getting weaker and the pain continued – this time moving down her legs and eventually to almost all of her joints. Allison couldn’t move up and down the stairs and struggled to put on socks. She went from being a healthy, active student to weighing only 64 pounds. Alarmed by the rapid deterioration of her weight and growing pain, Allison was referred to Dr. David Keim, a pediatric rheumatologist at Prevea Medical Center.
After her first appointment with Dr. Keim, Allison was diagnosed with polyarticular juvenile idiopathic arthritis in her wrists, ankles, fingers, jaw, neck and hips. Allison began taking a few different medications and had physical therapy twice a week. Allison has now finally found a medicinal combination that keeps her arthritis in a controlled state. Currently she takes four different pills daily and two different injections, one weekly and another every two weeks. As a child, Allison said she grew up “secretly hiding my vitamin D from my parents”, but is now proud to say she confidently gives herself both of her shots.
Currently a senior in high school, Allison has fought back against her arthritis by staying active and pushing through the pain. A true competitor at heart, she is a three-sport athlete – participating in cross country, basketball and track. Allison remarks that it’s sometimes difficult to explain her JA to coaches and teammates because she “looks like everyone else”. It’s not uncommon for her coaches to forget about her diagnosis, but Allison has a good handle on communicating with each of them on bad days.
“I learned that if I allow myself to just sit and let my body cripple up, it will do just that. The more active I can stay, the better I feel as long as I don’t push it too much. Running allows me to control my own motions and reflect on the challenges of my sickness, “says Allison. “Once I cross the finish line for my cross-country races, I get the satisfaction of beating those challenges. After all of the painful shots and nauseating medications I have gone through, knowing I can finish a race is a victory.”
For her parents, Jamie and Amy, watching her compete is always a bit nerve wrecking but they are confident in her ability to know her limits. “When we watch Allison play, it’s easy for anyone watching to forget that she has arthritis because she competes so hard in all of her sports, “remarks Jamie. “We are very proud of everything she has accomplished.”
“Allison amazes both of us, “says Amy. “She has always had a positive attitude and is a truly unique individual. While she has gone through so much in such a short period of time, we believe God picked her for a reason. She doesn’t ever use her arthritis as a crutch.”
Locally in Sturgeon Bay, the Alberts have yet to meet another family with JIA. After participating in the Jingle Bell Run, Jamie, Amy, Allison and younger sister Ashley attended the 2016 National Juvenile Arthritis Conference in Phoenix, Arizona for the first time. (Older brother Jeffrey could not attend due to work commitments.)
“The JA Conference was a great experience, especially since we had never met other parents, kids and siblings with arthritis. It was a comforting and reassuring experience for all of us, “Amy recalled. “There was so much information it was almost overwhelming and by the end of the day we were all exhausted, but it was also so important. Allison and Ashley both still keep in touch with friends they have made there.”
This holiday season, Allison will serve as the Young Adult Champion at the upcoming Jingle Bell Run in Green Bay, Wisconsin and has recently formed her team, Alli’s Allies, to raise money for a cure.
As Allison goes through her senior year as her school’s student council president and volunteering in various groups in addition to her sports, she is also looking forward to graduation and college. Allison has her sights set on becoming a pediatric rheumatologist and using her experience growing up with JA to help those afflicted with childhood rheumatic diseases.
“Ever since I got sick, I have had the desire to become someone like my doctor. I have the passion to do it – I get excited whenever I think about it. “exclaims Allison. “It was hard to see my parents go through the process of watching me struggle every day to slowly admiring my progress as I started to recover. I want to help families and especially the patients the same way I am getting helped.”
As a true Champion of Yes, we look forward to seeing Allison succeed and conquer her dreams!
You can help Allison and others like her – register for a Jingle Bell Run near you today! Get in the spirit of giving at this festive fun run, where 100% of your registration fees and fundraising helps support research for a cure!
- Sign up for the 2017 Jingle Bell Run
- Address Shortage of Pediatric Rheumatologists
- About Juvenile Idiopathic Arthritis
- Participate in JIA Research