SAN RAMON -- Parents of a child with an eating disorder can find themselves on an emotional roller coaster.
There are resources for those with eating disorders, but few for parents who must deal with the ups and downs of a disease with the highest mortality rate of all mental illnesses.
"Any kind of addictive behavior is going to affect the structure of the family," Nancy Clarkson said. "It's like having an alcoholic in the family."
At 14, Clarkson's daughter began suffering from anorexia nervosa. Clarkson and her husband, Bill, now mayor of San Ramon, struggled on their own for a year before seeking help from Jackie Holmes of Concord's Casa Serena, an outreach program for people with eating
"Those were dark days," Clarkson said. "Living day to day knowing that your daughter can die is very numbing. There was no happiness there."
Eventually, her journey led her to start a support group for other parents.
As many as 24 million Americans suffer from anorexia, bulimia and binge-eating disorder, according to the National Association of Anorexia Nervosa and Associated Disorders. Those with eating disorders are at risk of heart failure, organ failure, malnutrition and suicide; and eating disorders have the highest mortality rate of any mental illness, according to the association.
Holmes said eating disorders are widespread in her county.
"This is Contra Costa, the denial capital of the world,"
Holmes said due to a lack of a resources, many in the Bay Area seek treatment in Southern California.
"Eating disorders are both medical and psychiatric conditions," Holmes said. "I have clients that will stare at a bowl of cereal and think if they eat it they will get fat. ... It's life threatening. Families don't know what to do."
As Clarkson dealt with her daughter's condition, she wanted to connect with other parents going through the same thing. She sought out local support groups, but found none.
In 2007, she attended a National Eating Disorder Association conference in San Diego.
"It was the first time being around other parents suffering with the anguish of having a child with an eating disorder," she said. "I didn't expect to experience there what I experienced."
She found others felt the same things she was feeling, and were dealing with the same issues. The other parents urged her to start a support group when she got home.
Upon her return, her husband spoke to a reporter about his wife's desire to start a support group, and an article was written.
Clarkson's phone began ringing soon after the story was published.
"I realized how needed support services for families were," Clarkson said. "People were just aching to speak with someone who understood."
About 15 people came to the first meeting in November 2007.
Pleasanton resident Leslie Summerfield began attending Clarkson's meetings while struggling with her daughter's eating disorder. Her daughter developed anorexia at age 15 and at one point had lost so much weight that she had to be hospitalized.
"It was a couple of the most stressful years of my life," Summerfield said. "It's so hard to see your child suffer and it's so scary."
Summerfield said she didn't learn until later that many of the behaviors her daughter exhibited were part of the disease.
"The anxiety and the crying and the depression and the irritability and the obsessiveness are all part of it and it's not their fault. Parents need to understand that," she said.
Her daughter learned of Clarkson's group and urged her mother to go. "She felt bad for what she was putting me through," she said.
Parents talk about their children and their experiences during group meetings. Those who have dealt with the disorders longer help educate. Clarkson also invites specialists to speak.
"Eating disorders impact the whole family system," Summerfield said. "They cause conflict in the family, and you need support. Nancy's group helps parents understand all of this."
Today, Summerfield's daughter is recovered and is a Cal Poly San Luis Obispo student. This summer, she's working as a counselor at an eating disorder clinic in Fremont.
Over six years, Clarkson's daughter also overcame her eating disorder and has put it behind her.
Even though her daughter is fully recovered, Clarkson still runs the support group free of charge. About 10 to 12 parents come twice a month to Discovery Counseling Center in Danville where they share feelings, knowledge and strategies.
"I see the pain in the faces of the other parents and I remember what it was like for me not having anyone to talk to," Clarkson said. "It's just giving them a soft place to land once or twice a month."
Holmes of Concord's Casa Serena said Clarkson is supplying the area with a much-needed service.
"Nancy is providing community support for people who don't know where else to go," Holmes said. "She just shows up to help people because that's what she does. It's in her nature. She's paying it forward."
Contact Jason Sweeney at 925-847-2123. Follow him at Twitter.com/jason_sweeney.
Hometown: San Ramon
Claim to fame: Founded a support group for parents of children with eating disorders.
Quote: "I realized how needed support services for families were. People were just aching to speak with someone who understood."
Eating Disorder Support group
When: Meetings are at 7 p.m. on the second and fourth Monday of the month
Where: Discovery Counseling Center, 115-A Town and Country Drive, Danville
Details: www.getwelltogether.com; email email@example.com
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