Mar 5, 2020
Episode 25: Growing up With Different Abilities with Erin Magennis
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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Show Music:
Theme Song: 90s rock style by monkeyman535 under CC-BY 3.0 License
(www.freesound.org)
Self Care Song: Green and Orange No Water by Duncan Alex under
CC-BY 3.0 License (www.freesound.org)
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