Capitol Hill Day 2005
Article reprinted with permission from the Brighton-Pittsford Post
PITTSFORD WOMAN STEPS UP AS PSORIASIS ADVOCATE
Starting a support group and participating in Capitol Hill campaigns are among Sandra
Hawbecker's activities
By Jeremy Moule, Brighton-Pittsford Post
jmoule@mpnewspapers.com
Since she was a child, Sandra Hawbecker has knitted. "It's a task that I personally think I am lucky to be able to do," she said.
Hawbecker, who lives in Pittsford, has psoriatic arthritis. At one point, most of her joints were affected by the condition—painful, swollen and stiff. She believes that years of knitting have helped, but credits a trial drug with the main role in checking the symptoms. At last count, the number of her affected joints had dropped to 36, she said.
In addition to the psoriatic arthritis, Hawbecker also has psoriasis, which causes dry, red scaly patches on her skin and can cover as much as 95 percent of the body. Psoriatic arthritis and psoriasis are related, with about 10 to 30 percent of people who have psoriasis also having psoriatic arthritis, according to the National Psoriasis Foundation.
Hawbecker is not content to just live with the conditions. She wants to see progress in treatments, and she wants others affected by psoriasis or psoriatic arthritis in Rochester to have a support system.
She has tried to drum up research funding on Capitol Hill and is starting a local support group through the National Psoriasis Foundation.
In April, she took a trip to Washington, D.C., as part of a five-person contingent from New York to urge local representatives to support the Arthritis Control and Cure Act of 2005, as well as to push for recognition of August as Psoriasis Awareness Month. She met with staff from the offices of Congressman Randy Kuhl and Senators Chuck Schumer and Hillary Clinton.
Hawbecker is also concentrating on efforts closer to home. She is working to form a support group in Rochester for people with either condition. They have to deal with time-consuming treatments that can be expensive.
"What works for one person will not work for another person," she said.
Those with the disease can become self-conscious: "It can be an embarrassment when summer comes to fly to wear short sleeves or shorts," Hawbecker said.
And they can become depressed, she said.
A support group would give people a place to talk about the issues and challenges they face among people who have had similar experiences. It would also give them access to some helpful resources.
"You're able to bring in doctors, you're able to bring in speakers. You have the camäraderie of another person," Hawbecker said.
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