Seattle Culture

Support Gap

Peer support groups are lifelines when your disease doesn't fit your age

By Hallie Golden January 9, 2015

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Less than a year after Judy Haley gave birth to her daughter, she began having trouble breast-feeding, so her doctor sent her to have a mammogram. The result was devastating for this then 39-year-old Washington State University business student—breast cancer. “It was overwhelming in every direction,” she said. She assumed the diagnosis meant the end of her life and a motherless existence for her daughter. But after Capitol Hill’s Gilda’s Club referred her to the support groups at the Young Survival Coalition (YSC) (youngsurvival.org), an international organization geared toward women younger than 40 who have breast cancer, she quickly realized how wrong she was.

Support groups bring together individuals going through similar situations so that they may learn and gain support from one another’s experiences. But when those individuals are young people who have been diagnosed with a life-altering condition rarely seen outside the geriatric demographic, peer support groups can be something of a lifeline, because, although their disease might be the same as for those more than twice their age, it will likely affect them quite differently.

Haley’s diagnosis meant she was among the less than 2 percent of American women diagnosed with breast cancer by age 40. She said that YSC’s support groups have helped her and her peers by covering everything from the best way to tell a boss about the diagnosis to fertility concerns to reconstructive surgery. In fact, the first meeting Haley attended at YSC was on reconstructive surgery. Although she said she gained some very helpful information, her biggest takeaway from it was the realization that “there’s life after breast cancer.”

No matter the disease, finding, organizing and facilitating these types of support groups can be a challenge. One underrepresented group is middle-aged men who suffer from heart attack or stroke, for example. More common are support groups targeting teens and children with diseases more common in older people. Darla Varrenti founded the Nick of Time Foundation (nickoftimefoundation.org) as a support organization for young people who have suffered sudden cardiac arrest (SCA), in memory of her 16-year-old son, Nicholas, who died of SCA. “People think that heart issues are only adult issues, and they’re not,” she said, “Lots of kids have heart problems.”

Based in Mill Creek, the Nick of Time Foundation has almost 1,000 volunteers, between the ages of 12 and 80 years old, who help others avoid SCA by “teaching CPR, telling the communities about the importance of AEDs [automated external defibrillators], and telling their story, if they’re comfortable with that,” Varrenti said. Many of the young survivors also get together about once a month to discuss the ways in which living through SCA has impacted them.

Similar to SCA but aiming at an even younger group is the Children’s Hemiplegia and Stroke Association (CHASA) (chasa.org). “When you say, ‘My child had a stroke,’ people don’t believe it because it is kind of a geriatric condition,” said Jana White, board president of CHASA and the mother of a girl who had a stroke before she turned 1 year old. This nonprofit organization uses an online Listserv, a Facebook page and a national retreat to help spread information and support.

White said that CHASA started with only a handful of mothers and now includes about 5,000 families. “My child is nearly 7,” she said, and “her knowing that there are other people—other kids—who are just like her, I think that’s really important.”

For teens and young adults diagnosed with cancer, finding others out there dealing with the same disease isn’t so easy. According to the Fred Hutchinson Cancer Research Center, there are an estimated 70,000 people between the ages of 15 to 39 diagnosed with one or more forms of cancer every year in the U.S. Yet, according to the Seattle Children’s website, this age group can “fall into a gap between cancer treatment programs designed for children and those designed for adults,” which can result in delayed diagnosis and treatment. That is where the Seattle Children’s Adolescent and Young Adult (AYA) Cancer Program (seattlechildrens.org) comes in. It provides both medical care, such as fertility preservation, and support programs, designed in part by its teen advisory group.

Arthritis can also be misunderstood as affecting only those in the latter part of life. But in Washington state alone, more than 6,000 children have juvenile arthritis (JA), which is why The Seattle Foundation offers the KAT (Kids And Teens) program (arthritis.org/washington) for those children and their families to learn from and interact with each other.

The community ties and support established through groups like these can last a lifetime, whether a person’s condition does or not. Haley, who was able to defeat her breast cancer and is living today with no evidence of disease, has stayed with YSC. “I’ve found that part of my personal healing process is I need to give back,” she said. She became a volunteer and today is one of YSC’s state leaders for Washington, and another perfect example of life after breast cancer. +

 

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