When Marilyn DeWeese tells you about her health, the first thing you might notice is her shaky voice.
"You can look well, and not be well," she explains.
Marilyn was diagnosed with systemic scleroderma 16 years ago. The rare disease affects almost her entire body, including her vocal cords. It causes her skin and other organs to harden.
She has a hard time using her hands for even the simplest things.
When she makes a cup of coffee in the morning, her husband opens her milk. Marilyn says finding a primary care doctor was difficult.
They don't all know about her disease and not everyone is willing to work with her specialists in Indiana. For her, finding someone in St. Joseph was like hitting the medical jackpot.
"It was really a godsend," she says.
The St. Joseph office is closing June 20. Presence Health sent us a statement saying it's trying to ".....make the most positive impact in our communities and with our patients."
Presence Health says there's quality care only 20 minutes from St. Joseph. For Marilyn, the drive isn't the issue.
"It's not just about the mileage, it's about finding someone who's willing to work with specialists who aren't local," she explains.
Marilyn says this closure means a fight for her health now also includes a search for help.
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