Life with lupus

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Enduring life with lupus

By Sadowski TRIBUNE STAFF WRITER 03/29/2004

There are 19 bottles of prescribed medications in Bandru's cabinet. Every day, a couple times a day, she has to take a pill from 17 of those bottles.

Lupus has engrossed her life. It's forced her to quit her career as a social worker. She's curtailed her social calendar. She can't stay in the sun for long. She's even had to restrict one of her favorite activities, reading.

"I used to love to read, I'd read a lot," said Ms. Bandru, 32, of Meadow Avenue in Scranton. "But there is some memory loss involved with the disease. Now I can only read in bits and pieces. It's been very difficult."

What's more difficult is there is no cure for lupus -- yet. That's why Ms. Bandru is joining about 10 other locals on a trip to burg for a Lupus Advocacy Day rally Tuesday on Capitol Hill.

Lupus is a lifelong disease that causes the immune system to attack the body's tissue and organs and causes conditions including fatigue, achy joints, fevers and headaches.

For most people, lupus is a mild disease affecting only a few organs. For others, it may cause serious and even life-threatening problems.

"Basically, the immune system turns on the body," said Beth Rundell, branch director for the Pocono/NE Branch of the Lupus Foundation of Pennsylvania.

The rally supports further funding for lupus research and awareness. Ms. Rundell said that before the rally, state lawmakers are meeting behind closed doors in a caucus to learn more about the disease from experts.

Ms. Rundell said the caucus and rally give legislators a chance to put a face on a disease not many people know about.

"It's still something when you say, 'I have lupus,' not many people know what that is or what it means," she said. "This is as much for education and funding as it is for awareness."

She said the state earmarked about $100,000 for lupus research last year, and she said she hopes that amount will increase once legislators know more about the disease.

After the caucus, those same legislators will see about 60 lupus patients and supporters from across the state at the rally. They'll also be able to snag a glimpse at Ms. Bandru's artwork -- a wire sculpture of herself, filled with every empty bottle of medication she's taken over the last two years.

The bottles fill the sculpture's feet to its shoulders. That's two years of treatment since she was diagnosed with the disease. She said that while sculpting was emotionally excruciating, the five-month process was worth every second.

"When I was done, seeing all of the bottles was tough," she said. "But I'm trying to make people aware of lupus, and how there needs to be more research."

For Ms. Bandru, it isn't about feeling sorry for herself or wondering what she could have been doing -- it's about living her life how she can.

"It's a situation where you have to know your limitations," she said. "But there are new treatments that I have been trying, and I'm always hoping that someday, there will be a cure."

For more information, visit www.lupuspa.org, or call the local office at 945-5118.

Cheryl in CA

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