Family battles rare genetic disorder
FAIRMONT – Arianna Hall seemed to be in good spirits Monday morning. It was her 11th birthday, and only her feet hurt after performing in dance recitals all weekend.
But unlike most 11-year-olds, Arianna was taking the day off from school to recharge.
“It takes a few days for her to bounce back,” said her mother, Jess Hall.
Two years ago, Arianna was diagnosed with Ehlers-Danlos Syndrome, or EDS. It is a rare genetic connective tissue disorder that results in loosened and unstable connective tissues, allowing it to default and stretch, along with fragile and sometimes hyper-elastic skin that bruises, scars and tears easily. This is accompanied by acute and chronic plain.
“She was having joint pains in her hands, and she complained of smaller pains everywhere else,” her mother recalled. “One day, her hands were so cold, she was running them under the hot water. At first I thought it was RA … We took her to her doctor we see for another neurological order.”
There is no treatment or cure for EDS, and because of its rarity, Jess Hall spends much of her time educating doctors and teachers about Arianna’s condition.
“There is chronic pain,” Hall said. “She can have many dislocations in a day. She spends 95 percent of a day in a lot of pain. In the past year, it has gotten worse but every day is different.”
There are several different types of EDS, and Arianna has been diagnosed with both cardiovascular and vascular EDS.
“Vascular is life-threatening,” Hall said. “Organs can rupture, blood vessels.”
“She bruises easily,” Hall said. “She’s dislocated her ribs just by sneezing, twice … In November we learned she has spine compression, and her spine is unable to hold her weight.”
There is a multitude of frustrations from all sources with Arianna’s EDS.
“Just because it’s invisible, and because you can’t see it, doesn’t mean it’s not there,” Hall said. “It doesn’t mean she’s not suffering or having something that is debilitating … She’s had a lot of things taken away: no contact sports. They are allowing dancing until something breaks. She’s also suffered depression and she says she just wants to be normal and treated like everyone else. She misses a lot of school, and while the school understands now, adaptations needed to be made. When she has a day where her hands hurt, someone scribes for her.”
Then there is the sad reality of how it won’t be getting better.
“She’s the only 11-year-old I know who has a bucket list,” Hall said. “She has a list of things she wants to do before she can’t walk, or things she wants to do before she leaves this world. It’s tough on her and tough on us because we can’t take away her pain or fix it. She doesn’t get the same life experiences as we do. She asks us, ‘When is the pain going to go away?’ Some days all she can do is lash out, and other days she just cries.”
But the days like her 11th birthday – when she isn’t in bad pain – she makes the most of it.
“One thing I’ve learned is to make everyday count, and enjoy what you have that day, because tomorrow it could be gone,” Hall said. “To know she fights so hard, and she does it with a smile on her face. You never ask for these things to happen, but it depends on what you do with it, and we hope to pay it forward by bringing awareness.”
As it turns out, there is a second child in the area with EDS, along with a few adults who also suffer from it.
“Our goal to give back is to try and connect and make a support group,” Hall said. “For both children and adults, so they know they’re not alone.”
Minnesota Gov. Mark Dayton has declared May as EDS Awareness month. There is also a Facebook EDS Minnesota page, along with a push to put EDS on the list of disabilities.
Arianna, however, looks at her EDS in the best light possible.
“It doesn’t mean I can’t do anything,” she said.
More information on EDS can be found at www.ednf.org or facebook.com/bendyblindblessed