Profile: Don't Get Mad — Educate

Pinalben "Pinky" Patel
by Miriam Davidson on January 1, 2011 - 4:51pm

QUEST Vol. 18, No. 1

Pinalben “Pinky” Patel, 28, was born in a village in Western India and moved to the United States with her family four years later. She already was starting to show symptoms of Friedreich’s ataxia (FA).

“My aunt and cousin took me trick-or-treating for the first time,” she says. “When we got home, my aunt complained that I kept falling down on purpose for attention. A couple years later my kindergarten teacher noticed that I wasn’t placing my feet the way I should when walking.”

Patel received an FA diagnosis when she was 11 years old, and began using a power wheelchair at age 13. At first, she was able to transfer in and out of the chair by herself, or with minimal assistance. Throughout high school she maintained the ability to bathe, brush her teeth and get dressed by herself.

“The beginning of my progression from just wheelchair user to ‘FA-er’ was in the sophomore year of high school, when I was diagnosed with insulin-dependent diabetes,” reports Patel.

While Patel was in the hospital, the doctors also found a thickening of her heart walls, and she began taking medication for that, too.

Two years later, Patel fainted at school and went to the emergency room. “When I got to the hospital, the doctors found that I had bradycardia, a fancy name for slow heartbeat. They decided I needed a pacemaker implanted to regulate my heartbeat and surgery was scheduled.” She now has a pacemaker, which she gets checked twice a year.

By the time Patel started college, she needed help with all her personal care. “People asked why I drove my wheelchair so drunken-like, why I didn’t transfer myself to and from my wheelchair, or why I couldn’t dress and bathe myself like that other wheelchair-user.

“Of course those comparing queries aggravated me, but I kept the anger in my mind. Instead of raging at the askers, I calmly educated them about FA. They are not asking to be rude; they are just ignorant. There are so many different disabilities out there, and everyone can’t know about every disability.”

During Patel’s last year of high school, she developed a hearing problem. “My friends would tease me,” she says. “They said that I only listen to what I want to hear. I remember getting annoyed at their taunting. I never liked being made fun of about anything related to my disability, but I did not know that this problem was also related to FA.”

It wasn’t until Patel graduated from college and began attending support groups that she learned her hearing problems were caused by FA. “It’s called auditory neuropathy (AN), and it basically means I cannot hear well in crowds, on the phone, and any other situation where there are two noises or more occurring at once.”

Patel also was unaware that her weakened eyesight was the result of FA until she met others online who also were in her situation. Even after LASIK (corrective) surgery, Patel has shaky vision, poor depth perception and wears prescription glasses.

Patel received a journalism degree from Murray State University in Murray, Ky., and now works as a freelance writer in Paducah, Ky.

“I have been lucky to have friends from school (who stopped teasing me after I explained about the AN) and my support groups,” Patel says. “I don’t care what strangers or distant relatives think of me.

“The most important knowledge is that the people who are close to you understand your condition. Don’t worry about others. It is the only way to live!”

Pinky Patel has a website at http://pinkdreams_1.tripod.com.

The entire In Focus: Friedreich’s Ataxia report, can be downloaded as a printable PDF from this page, as well as from the Friedreich's ataxia disease page.

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