She didn’t expect to be spending her retirement years as an advocate for a disease she knew little about until a few years ago.
Then, like a brother before her, Diane Cameron was diagnosed with a genetic disease called Alpha-1 almost four years ago.
“I was experiencing difficulty climbing flights of stairs, walking up inclines, carrying grandchildren and walking while talking,” the nearly lifelong Webster resident said.
At first, she said, she chalked it up to weight. Then she was tested for her protein level about three years ago. With 11 being the “cut-off” number, her protein tested at 5.3.
A pulmonologist told her that her lungs looked like she had had emphysema for nine years.
She had never smoked.
Being a teacher by profession, Cameron had a desire to educate herself about the disease. At about the same time she was seeking doctors and treatment, she sought out and received scholarships (from drug companies) to attend national conferences on Alpha-1 in St. Louis and San Francisco.
She and her husband, Roger, also recently attended an educational day in Harrisburg, Pa. Along with her brother and husband, she plans on attending a third national conference, in Orlando, Fla., in June.
“I have grown from being terrified about confidentiality (about her health condition),” Diane said, “to having a heartbeat for bonding with others with Alpha-1 and helping them. People aren’t educated in this, but knowledge is a great thing.”
When she wasn’t able to locate an Alpha-1 support group in this area, she decided to start one.
Sixteen people from as far as Buffalo and Niagara Falls attended the first meeting last fall.
Cameron is hoping to have as many as 40, from all over Western New York, attend the second meeting April 24, in Webster.
Looking ahead, she’s hoping the support group will meet four times in 2011, and that an Alpha-1 conference can be held locally.
Now Cameron has a nurse visit her home once a week for a two-hour infusion that puts protein back in her body.
Her brother, Bruce, is now on oxygen 24 hours a day, seven days a week. He is on a list for a double lung transplant.
A 1963 graduate of Webster’s R.L. Thomas High School, Cameron has bachelor’s and master’s degrees from SUNY College at Potsdam. She has two grown sons.
She retired from the Wayne Central School District, where she was a reading specialist and taught for 35 years, in 2007. Today, she tries to walk regularly on a treadmill and with her beloved grandchildren for whom she “grammy-sits” several times a week.
