Erythropoietic Protoporphyria (EPP)
I feel blessed that the Secretary of State in Michigan issued me a disabled parking permit. I know how important it can be to those of us who live with such a rare disorder, so I thought I'd share my story in hopes that it will assist others in obtaining a disabled permit. I also hope my story will open more eyes to the fact that EPP is in many ways a disability.
I've had Erythropoietic Protoporphyria (EPP) symptoms since I was 10 months old. When I was very young I was teased and emotionally tormented by the kids in school due to my EPP. They would call me named like Fish, Scales, Scabs or any other name they could think of till I'd break down crying or run home. They didn't understand what EPP was, they only saw that my face and arms were swollen with rashes, and itching until my skin was raw. It was hard to take while I was growing up, but then as I got older I realized children are not always nice. What's surprising is some of those children seem to never grow up and still get some kind of pleasure out of making fun of others or of what they do not understand.
Back in 1992, my doctor told me he wanted me to apply for a handicap parking permit, not wanting me exposed to the sun any more than absolutely necessary. My doctor wrote a letter to the Secretary of State's office explaining what EPP is, the danger of sun exposure and how quickly the sun can affect a person with EPP. When I took the letter to make my application for a parking permit, I was shocked at the way I was treated.
The man who waited on me began to laugh as soon as he read the letter from my doctor. Then in a loud voice he said "we don't issue handicap permits because someone can't go in the sun, there are people out there with real medical problems, I suggest you put some clothes on." I couldn't understand his remark considering I was wearing a business suit at the time. I tried to explain the situation, speaking softly to make it clear I didn't want the entire room to hear our conversation. Rather than listening to me, this man just repeated what he had said, only louder. I walked out fighting my tears, shocked and embarrassed as everyone in the room stared at me.
My husband advised me to call the state directly to report my experience. I called and explained what had happened and how unprofessionally I was treated, and that fact that I have been tormented my entire life over this disorder by people who don't understand. The person I spoke to asked to me write a letter regarding my experience and to enclose the letter from my doctor and send it to the statewide Secretary of State's office. Within a week I had a letter of apology and my parking permit.
The letter from the Secretary of State's office mentioned that their department has guidelines at the local offices for how staff should deal with health issues. The department assured me that they would put a policy into effect instructing the staff to refer uncommon problems to the state-wide office for review. Applicants for disabled parking permits who have non-standard health problems will be notified by mail of the decision on their permits.
Best Wishes and God Bless.