Michelle Receives Ehlers-Danlos Treatment at Lurie Children’s Hospital

 Michelle sees 14 specialists at Lurie Children’s Hospital in Chicago.

michelleBy Jerrilyn Zavada of The Times

“In 2011, Michelle Soria was diagnosed with idiopathic scoliosis, a curvature of the spine that occurs during adolescence.The Times featured Michelle’s plight with scoliosis in a September 2012 feature.The 13-year old rural Ottawan was given an explanation on Oct. 31, 2012, for the scoliosis when she was diagnosed by a geneticist with Ehlers-Danlos Syndrome, a rare condition that results from inadequate amounts of collagen — the normal protein glue of tissues — in the body.After thoroughly researching her family medical history and conducting an in-depth physical exam, the geneticist determined Michelle has hypermobility-type EDS, which though not typically life-threatening, causes chronic joint pain. The hypermobility is evidenced by fragile skin and tissues and loose joints. EDS can affect the entire body. Michelle sees 14 specialists at Lurie Children’s Hospital in Chicago.”A lot of her systems are affected,” Michelle’s mother Minette Armstrong said, noting her daughter’s heart is monitored by echochardiograms, and she has chiaris one, a malformation in the brain skull; asthma; gastroesophageal reflux disease; and gynecological issues. “They are all linked to EDS — it makes everything loose and unstable.”Armstrong has devoted herself to researching the condition. She said there isn’t a great deal of literature available about the condition, but she has learned much by hearing about others’ symptoms and how they adapt. Armstrong updates a Facebook page she created: Michelle’s Journey with Ehlers-Danlos Syndrome (EDS).”That’s one thing I do,” she said. “It helps me to get it out. It helps my family and friends and people who love her and care for her to know what life is like for her.”She has a lot of pain she deals with every day — back pain, ankles, knees, feet, fingers, elbows,” Armstrong said about her daughter. “It will probably get worse, especially joint pain. If you present with joint pain early, there is a high chance of leading to osteoarthritis.”Since her diagnosis and the evolution of her condition, Michelle’s activities have become more limited. Although she likes to dance, she often plays video games, draws and reads. Swimming, hot tubs and heating blankets help, but some days she spends a lot of time in bed. She must avoid contact sports, which easily can dislocate her joints.”I can’t do all the activities I used to do like tennis,” Michelle said. “They used to tickle  me. It doesn’t feel good; it hurts. I can’t do it anymore. I scream for help.”May is National EDS Awareness Month, and public awareness is Armstrong’s goal as Michelle is met with stares and people making faces at her when she goes out in public, which Michelle said makes her “feel sad and embarrassed.””The hardest thing is she looks fine and then they see a wheelchair,” Armstrong said. “If we go to Walmart and she’s doing OK and she starts to hurt, we will give her (a) wheelchair, and people start to think she’s lazy. They don’t know. There’s times when she’s in tears, and she’s hurting so bad.”Although dealing with the unpredictability each day offers is difficult, the family is relieved to finally have some answers.”I went 13 years without knowing what was wrong with no explanation,” Armstrong said. “It’s linked altogether. Thank God we have this diagnosis. We never would have seen a neurosurgeon or a heart doctor. We wouldn’t have reason to.”
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