Benefit for Ashley Hagen Dec. 2
HAGEN FAMILY: Above from left: Lizzy, Ashley, Brad, Ben, and Allyson Hagen. Ashley Hagen is pictured holding the family dog whose name is Babe. (Submitted photo)
By MELANIE PILTINGSRUD
Contributing Writer
At a time when most teenagers are worrying about grades in school and what outfit to wear to the movies, 14-year old-Ashley Hagen worries about how to deal with the pain and lower the toxicity level in her body.
At 12 years old, when she was just finishing sixth grade on the A honor roll and anticipating her involvement on the varsity cheer team, Ashley sprained her ankle playing kickball with her cousin. She woke up the next morning with her ankle bruised, swollen, and painful, but that was just the beginning. The pain from Ashley’s sprained ankle didn’t abate over the next six months, but spread up her entire leg, causing paralysis in her foot. Ashley saw multiple doctors and had multiple x-rays, CT scans and MRIs.
The ankle sprain occurred in May 2016. Mayo Clinic doctors finally diagnosed her condition in November of the same year: Complex reginal pain syndrome (CRPS), a rare and complex neuroinflammatory disorder that affects the immune system, autonomic nervous system, and the central nervous system. CRPS is incurable and at this point doctors do not understand what causes it. It is categorized as the highest rated pain condition on the McGill scale. According to Ashley’s mother, Allyson Hagen, the pain of CRPS has been described as “being wrapped in barbed wire, set on fire, and then electrocuted at random intervals.”
Ashley underwent a painful process of physical therapy to regain function of her foot, and after eight months was able to walk without crutches. By March 2017 she had regained full strength and function of her leg. She made the fall cheer team and, although she tried to make the best of things and keep up in school, the disease was progressing.
By November 2017 Ashley was so sick she couldn’t continue at school. She developed gastroparesis, nerve damage to the stomach that causes frequent nausea & vomiting. Postural orthostatic tachycardia syndrome (POTS) affected Ashley’s heart, and the malfunction of her autonomic nervous system caused Ashley’s blood pressure to drop whenever she stood up and her heart to speed up to 150 beats per minute. Exhaustion easily set in. Ashley’s pain spread over her entire body.
Fewer than 200,000 people each year are affected with CRPS, and many doctors are unaware of the condition. Even fewer know how to treat it. With only a few doctors across the U.S. who specialize in CRPS, the Hagens had to seek help outside of Minnesota.
In January, Ashley and Allyson went to the Neurologic Relief Center in Arkansas, and the first month of treatment saw great results for Ashley, but then she developed infection. Allyson says, “From that point on we dealt with one step forward, two steps back and lost the progress we saw in the beginning of treatment.” After four months at the Relief Center, it was advised to take Ashley to a clinic in Pennsylvania that specializes in immune health. But after being away from home for so long, Ashley and Allyson needed to go home to be with family and regroup.
Over the summer the Hagens consulted with a local doctor. Ashley had Vitamin C infusions and other treatments to boost her immune system and detoxify her body in the attempt to find relief from the viruses and infections that plagued her. After eight weeks her blood work revealed that the treatments were ineffectual. “The doctor told us she has no immunity and no way to fight off infection,” says Allyson. “He was unsure of the next plan of care to take.”
The next option was the True Wellness clinic in Pennsylvania, which specializes in immune health and biological medicine. “Their training comes from Europe,” says Allyson, “and so they look at things differently. They’ve been very helpful.” There, for example, they found out Ashley’s lymphatic system was not working, which means Ashley’s body cannot rid itself of the toxins that everyone is daily exposed to. Part of Ashley’s treatment is to help her body to cleanse itself of those toxins.
Each month since September, Allyson and Ashley fly to Pennsylvania for a week, and rent a car and a hotel, none of which is covered by insurance. Ashley has a week of treatments at the clinic, and then they fly home for three weeks to continue the recommended medications and treatments. Although Allyson doesn’t know what the future holds, their plan for the moment is to keep attending the clinic in Pennsylvania.
“She’s in a lot of pain every day,” says Allyson. Ashley doesn’t receive any pain medication. Doctors encourage meditation and deep breathing when the pain becomes severe. “Remission from the pain is possible, and that’s our goal at this point,” says Allyson. When Ashley’s body begins to regulate itself again, the pain will decrease.
“I can’t even tell you everything she’s been through over the last few years,” says Allyson of her daughter. “She’s seen more doctors than probably some of us have during a lifetime.”
According to Allyson, Ashley does pretty well emotionally, but it’s difficult. “Anytime anybody sees her, she puts a big smile on her face and says everything’s okay,” says Allyson. “She’s not a complainer – at all.” This can even be difficult at medical appointments, because Allyson has to encourage Ashley to tell the doctors how she’s really feeling.
On Dec. 2 the Lions Club will host a pancake breakfast in conjunction with a silent auction for Ashley from 7 a.m. to 12:30 p.m. at New Richland City Hall. The NRHEG cheer team is also organizing a bake sale for the event. Treats at the bake sale will be available until they sell out. Everyone is encouraged to attend the pancake breakfast and show their support for Ashley. If you would like to donate items for the silent auction please contact Jennelle Olson at (507) 475-1383. Donations will be accepted until noon on Saturday, Dec. 1, and auction winners will be contacted by phone.