In this episode, we discuss what it was like growing up with multiple disabilities as a teenager. When she was 14, Erin Magennis began to experience a sudden change in her health and was eventually diagnosed with several different medical conditions, including EDS (Ehlers Danlos Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and sensory processing disorder. It was difficult for doctors to diagnose the different conditions. Additionally, she had to find doctors who understood the conditions and navigate the medical system as a teenager. The transition in care from childhood to adulthood was also very difficult, since the doctors did not know her history, did not have access to all of her medical records, and the disorders are relatively rare, so there was little research about treatment of the conditions.
Growing up with EDS, her joints would roll a lot, and her joints were shaped unusually. In order to cope, she had to be very attuned to her body so she wouldn’t get hurt. Due to her conditions, she was only able to stay in school for 1-2 hours per day, much of that being spent in the nurse’s office. Erin had to learn how to cope with chronic pain, but also how to communicate how her pain was affecting her.
With POTS, some days, she had difficulty being upright. This made school and exercise very difficult. In order to treat it, she exercises, eats salt, drinks a lot of water, wears compression stockings, and changed her diet. She had to set up a disability plan in order to manage school, where she spent 1-2 hours in classes focusing on her core classes and taking other classes online. POTS made it so that she had very little energy, so she needed to take each day one at a time.
For sensory processing disorder, she experiences sensory stimuli much stronger than others. Sometimes, strong senses are experienced as pain. She used cognitive behavioral therapy strategies to expose herself to stimuli, to reduce their effects on her.
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Hosted by: Jessica Temple and Lewis Temple
Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Parents of children with health issues should always consult their health care provider for medical advice, medication, or treatment.
Copyright 2020 Jessica and Lewis Temple