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Posts with tag young adults

Teens living with cancer create community online

In USA Today, kids with cancer bond online, teens with cancer are connecting online to find social support from other teens. The story features Simone Weinstein, who was diagnosed with acute lymphoblastic leukemia over two years ago. During treatment for her cancer, she lost her hair, eyebrows, eyelashes and the friends she had before the cancer diagnosis. She is afraid to have them see her, or be around them in case she gets sick from chemotherapy nausea. She has trouble controlling her temper because of the medication she is taking that causes extreme mood swings. So, she has chosen to be alone and isolated from the physical social world her friends enjoy.

Instead, she has turned to the Internet, and connects with other teens living with cancer, who understand, who know exactly what it feels like, and what is going on in her cancer world. According to Jennifer Ford, a psychologist at Memorial Sloan-Kettering Cancer Center, "The Internet has special appeal for adolescent patients. Young cancer patients have grown up with technology, and many already have their own websites and blogs.”

Some of the popular sites for teens and young adults include: Vital Options, LIVESTRONG Young Adult Alliance, SAMFund, Jimmy Teens TV, Teenage Cancer Trust, Teens With Cancer and Planet Cancer, which were founded to support the teen and young adult cancer community. To read the USA Today feature in its entirety, go here.

Week of awareness for young adults living with cancer

To raise awareness of the unique issues facing teens living with cancer, each year the first week of April is designated as National Young Adult Cancer Awareness Week. According to Vital Options, young adults are still aspiring to actualize their goals and dreams when cancer stops them from moving forward. Young adults facing cancer and serious illness often feel isolated as healthy friends are off living their lives. Living with cancer presents challenges to relationships, body image, self esteem, marriage, family, fertility and pregnancy, education, and employment. The threat of early death for young adults is profound, as they were just starting out into a life of their own not yet lived. How do you face the possibility of losing something before you had a chance to call it your own? In addition, many young adults have no health insurance and are often delayed in their diagnosis or not taken seriously as potential cancer patients. Some fast facts about young adults and cancer are:

  • More than 65,000 young adults in their 20's and 30's are diagnosed with cancer each year.
  • Cancer is the leading disease killer among 20 to 39 year olds.
  • Young adults have had less survival improvement than either younger or older cancer patients.
  • Progress made in cancer treatment has bypassed young adults
  • Young adults have the lowest participation rates in clinical trials.

Vital Options, LIVESTRONG Young Adult Alliance, Mothers Supporting Daughters with Breast Cancer, Planet Cancer, SAMFund, Jimmy Teens TV, and the Teenage Cancer Trust are some of the organizations and programs designed to meet the special needs of young adults with cancer. If you know a young adult with cancer, take a moment to pass along information on the resources listed here.

Re-Mission: video game helps young people destroy cancer

Developed by Hopelab, Re-Mission is a challenging, 3D video game with 20 levels that takes the player on a journey through the bodies of young patients with different kinds of cancer. Players control a nanobot named Roxxi who destroys cancer cells, battles bacterial infections, and manages realistic, life- threatening side effects associated with the disease. HopeLab stated that the results from its scientific study involving 375 teen and young adults at 34 medical centers in the United States, Canada and Australia showed young people who played Re-Mission were more likely to stick to their medication regimens than those who did not play the game.

The genesis for the video game came from Pam Omidyar's imagination while working in a research laboratory during the day, watching cancer cells multiplying under a microscope, and then going home to play video games with her family and friends. She got the idea that a video game for young people with cancer might play a positive role in helping them fight their disease. What if a video game designed especially for kids with cancer gave them a feeling of power over their disease as they blast away at the cancer cells? She had access to researchers to test the game and see if it really would help the kids. In 2001, Omidyar, wife of eBay Inc. founder, launched HopeLab to make this idea a reality. Today, HopeLab is a nonprofit organization that helps young people deal with chronic illnesses.

HopeLab is distributing a PC version of the game to young people with cancer, free of charge, through its website and online community at Re-Mission. The game is available is in english, french and spanish versions. The Re-Mission website also provides an interactive, online community where teens and young adults with cancer can share information and support one another.

Mortality Bites: young adults living with cancer

At 27, Kairol Rosenthal was diagnosed with cancer. Rosenthal is a choreographer, writer and director, whose work reflects her artistic perspectives as a young woman experiencing life and cancer survivorship. She wrote an essay on the Gen X cancer experience, which is published in the book "Help Me Live: Twenty Things People With Cancer Want You To Know." In addition, Ms. Rosenthal has directed twelve original performance projects. Currently, she is traveling across the country interviewing young adults with cancer.

According to the Mortality Bites book project, "Mortality Bites will be the first book to document the unvarnished stories of both men and women living with cancer in their twenties and thirties. Candid, savvy, defiant, subtle, private, sincere, and raw, the twenty-one interviewees in Mortality Bites change the way we think and speak about cancer in America." Rosenthal is looking for provocative or unusual perspectives on what it means to live young with cancer. If you are interested in being interviewed by Ms. Rosenthal for Mortality Bites, you can contact her at the Mortality Bites website.

Young cancer patients orphaned from cancer care programs

The Chronicle Herald has published Young Cancer Patients Unique, by health reporter, John Gillis, who highlights the need for special programs for teens and young adults diagnosed with cancer. In the column, he interviews Dr. Conrad Fernandez, an IWK Health Centre pediatric oncologist who states that teens and young adults with cancer are an orphaned group of patients whose distinct diseases and needs are not a focus of either child or adult cancer care programs.

According to Dr. Fernandez, the survival rate for people between 15 and 29 with cancer is lower than for children for a variety of complex reasons. Over half of children getting treatment for cancer are enrolled in clinical trials, but there are not as many opportunities for teens and young adults to be involved in research because they often fall outside the age cutoffs for both pediatric and adult trials. Dr. Fernandez said there has been a big push in the last five years to increase the accessibility to clinical trials for teens and young adults. The other reasons for lower survival rates for teens and young adults with cancer is discussed in Young Cancer Patients Unique.

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