Eppehimer Recently Commemorated International MPS Awareness Day
Eppehimer was born with the rare disease, a diseae with which he wasn’t diagnosed until he was 13. Growing up in Meadville, Pa., Eppehimer periodically saw doctors from the Erie Shriner’s Hospital when they visited his hometown. Aside from being put in leg braces to correct skeletal abnormalities due to his unknown disease, he led a fairly normal childhood. When he was in junior high, still uncertain what was causing his abnormalities, he was sent to the Shriner’s Hospital in Erie for an extended stay of several months. After extensive research, a probable diagnosis was finally given, Hunter Syndrome, or MPS type II.
Hunter Syndrome is one of eleven different types of MPS. In each type, a different enzyme is missing in the body’s cells. The human body has over 75,000 enzymes, but lacking just one of these eleven enzymes causes progressive damage over time. These enzymes break down cell waste so the cell can dispose of it.
“You have an enzyme that I don’t, which gets rid of cell waste,” Eppehimer said.
In MPS diseases, the waste remains in each cell for the most part. Every cell is affected; the entire body is affected.
In the more severe forms (which Eppehimer does not have), a child begins life normally, even walking and talking and then they begin to regress. In the attenuated forms, mental capabilities are not affected, but some other traits manifest themselves. Every major organ, the respiratory system, the gastrointestinal system, the central nervous system, teeth, eyes, joints and bones are all affected over time. In Eppehimer’s case, retinal degeneration began to present itself when he was in his 50s. By 62 reading was becoming increasingly difficult. As a pastor a large part of his work involved reading both for sermon preparation and for the administrative parts of ministry. He made the difficult decision to retire early and went on disability at age 63.
This year the International MPS Awareness Day was celebrated in Jamestown with a Pearl City Popcorn sale at Tracy Plaza, a proclamation by Mayor Eddie Sundquist declaring May 15 International MPS Awareness Day, the sale of purple striped cookies made by Ecklof Bakery, and the lighting of City Hall in purple for the week. The color purple represents the National MPS Society because it stands for courage. Pearl City Popcorn, owned by the Eppehimers, is donating all of the profits from this month’s sales to the National MPS Society.
When Eppehimer was growing up, no one among his medical team had ever heard of the MPS diseases. Today, when one of his doctors has an intern, the intern often says, “We learned about your disease in medical school, but I never thought I would meet anyone with it.”
For more information about MPS and ML visit mpssociety.org.