Heather DeMian of Columbia, Missouri: Ehlers-Danlos Syndromea
Heather is thirty-six years old and confined to a wheelchair. Heather was born with a rare genetic condition called Vascular Type Ehlers-Danlos Syndrome.
It’s a defect in her type three collagen that weakens the walls of her blood vessels, organs, and esophagus. “Everything is very weak.”
It makes her joints dislocate very easily. “When you see a new doctor and they see that you have Ehlers-Danlos, they immediately ask ‘what tricks can you do?’ ” A cynical smile comes over Heather’s face.
But condition is no laughing matter. It causes her a lot of pain and gastrointestinal problems, which are further aggravated by the pain meds that are prescribed to her.
Heather takes Zofran, an anti-nausea medication. “Zofran suppresses the gag reflex maybe half the time.” Her Medicaid pays roughly $1200 per month for her to have this drug.
She also takes Marinol, a pharmaceutical synthetic of the cannabinoid THC that is found in cannabis. Heather’s Marinol costs Medicaid roughly $1500 per month.
Together, these prescriptions total $2700 per month or $32400 per year, just to try to suppress Heather’s urge to vomit. Unfortunately, they rarely do. She has to carry a plastic container everywhere she goes for when the urge to vomit comes upon her. Obviously, she doesn’t get to go out very much.
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