WEST POINT -- Robin Alderin-Hietala has endured more trials in her 44 years than most people endure in a lifetime.
The West Point woman has survived breast cancer, ovarian cancer, and an accident that landed her in the hospital for three months after being hit by a drunken driver. Now she's battling lupus, an autoimmune disease that has claimed one of her kidneys and keeps her in bed for days at a time.
But nothing is about to stop her, she said. She's a survivor who wants to make sure others get the support and encouragement they need to carry on with their lives. She recently started a support group for people dealing with lupus.
"There's so much support out there for breast cancer and that's wonderful. God bless them for that. I'm a breast cancer survivor myself, but there's not a lot out there for people with lupus," she said. "Autoimmune diseases are killers, too, and they affect men, women and children alike. We need more research and development, and people need more support. The public needs to be better educated and aware."
In 1999, Hietala was diagnosed with breast cancer. She started seeing a psychiatrist to help her get through the mental aspects of a bilateral mastectomy and the illness itself. During that time, she was depressed, tired and achy.
"My joints were really aching, and as my therapy went on, my psychiatrist said he didn't think it was just depression. He said he thought something else might be going on, so he wrote down a list of blood tests I should get and sent me to my doctor," she said. "When one of my tests came back -- the anti-nuclear antigen -- my doctor said it was the highest he had ever seen in any of his patients. So here I am, going through breast cancer treatments, and they think I've got lupus, which I did."
According to the Lupus Foundation of America, lupus is a chronic, autoimmune disease that affects the skin, joints and organs. Signs and symptoms can include a butterfly rash across the nose and cheeks, joint pain, fatigue, headaches, fever, hair loss and mouth or nose ulcers. Approximately 5 million people worldwide have a form of lupus, and 16,000 people in the U.S. are diagnosed annually, according to the foundation.
Treatment varies depending on the type of lupus a person has; it can include steroid medication, aspirin, anti-malarial drugs and regular medical exams.
As Hietala learned more about the disease, she wanted to share her knowledge with others, but that came to a halt in 2007 when she was hit by a drunken driver.
"I spent three months in the hospital and had three major surgeries," she said. "Lupus made it harder for my body to recover, but now I'm at a point to where I feel good enough to start up the support group and a nonprofit organization."
The name of the group is Living With Lupus. Hietala's friend, Paige Hensley, is helping put everything together.
"I live next to Robin and I've watched her suffer with this wicked disease," Hensley said. "I know it's been a dream of hers to start an organization for lupus. We just had a yard sale and everything we raise goes directly to lupus research."
At the fundraiser, Hensley said, she was amazed at how many people said they had lupus or knew someone else who had it.
"We want to find these people," she said. "We want them to learn even more about lupus. We want to educate their friends and family and the community. It's not an easy disease to live with. Robin is sick all of the time, but she's also a fighter. She's doing this for others. It's coming straight from her heart."
The support group meets every third Wednesday of the month from 7 p.m. to 9 p.m. at the Clearfield Library, 562 S. 1000 East. The public is invited to attend.
"There's so much to learn about lupus," Hietala said. "When you are down with lupus, you are hit hard and you are down. You can't do much until the flare-up passes. We hope people will come out and attend the support group and seek every possible way they can to learn more. We just want them to know that we are here to help in any way we can."
For more information, visit www.livingwithlupusfoundation.net. The site will be changed to www.livingwithlupusfoundation.org in the near future.
Comments