Saturday, April 16, 2011

In Focus: Livestrong Young Adult Alliance

From time to time, I write about a lot of different nonprofit organizations here at Oh My Aches and Pains! The truth is, I have received support from many different organizations through my experiences with cancer, diabetes, hepatitis C, fibromyalgia and chronic pain. Taking the time to write about these different organizations gives me the opportunity to pay them back, raise awareness about their programs and services and invite you to get involved with them.

Today I want to talk about a committee within an organization you've all heard of: The Lance Armstrong Foundation, more commonly known as Livestrong. Specifically, I want to highlight the work of the Livestrong Young Adult Alliance.

Did you know that every year almost 70,000 young adults between the ages of 15 and 40 are diagnosed with cancer?

Did you also know that the survival rate for this age group has remained the same over the past three decades?

Boosting cancer survival rates and improving the quality of life for young adults with cancer are the dual purposes behind the work of the Livestrong Young Adult Alliance. The alliance is comprised of a coalition of organizations, like the National Collegiate Cancer Foundation, National Coalition for Cancer Survivorship and the I'm Too Young for This! Cancer Foundation, that are working to solve this problem and promote young adult cancer research. Knowing that unity is strength, together they strive to raise awareness of this problem and discover effective solutions.

Some of the conditions thought to contribute to this problem are:
  • delays in diagnosis
  • lack of health insurance coverage
  • overlooked early warning signs of cancer
  • lack of participation in cancer clinical trials

In addition, young adult cancer patients face unique challenges:
  • long-term effects from cancer treatments that need to be addressed over their lifetime
  • obstacles in reentering school or the workforce after treatment
  • health insurance coverage issues
  • infertility resulting from cancer treatments

How do I know so much about these issues?

In January, 1988 at the age of 22 I was diagnosed with leukemia, a blood cancer. After my diagnosis I faced many of the issues I have listed above, only at that time I didn't have the support and services of Livestrong to help me. It wasn't until 2006, when the UCLA-Livestrong Survivorship Center of Excellence opened its doors that I started getting help addressing all the late and long-term effects from my cancer treatment.

I wholeheartedly support the efforts of the Livestrong Young Adult Alliance and the work of The Lance Armstrong Foundation. They have been making a huge difference in my life for the past five years. I can honestly say that they are deserving of your support and your donations of time, effort and money on their behalf.

During National Young Adult Cancer Awareness Week earlier this month, April 3-9, I've learned about Break Cancer, a countrywide young adult cancer awareness project sponsored by the Livestrong Young Adult Alliance in partnership with URDB World Records. Inspired by Heidi Adams, who set a goal to receive the "Most Hugs Against Cancer" and set a world record at 575 hugs, I am setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours" on Friday, April 22 from 12 midnight to 11:59 p.m. Pacific Daylight Time. In that post, I will be writing about my experience as a young adult cancer patient.

I invite you to help me and the Livestrong Young Adult Alliance raise awareness about the issues facing young adults diagnosed with cancer. Please come back on April 22 and add your comment to my Break Cancer blog post.

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Felicia Fibro said...

It wasn't until recently that I realized that Livestrong had so many differently focused branches. That is great you were able to find so much support through them.

diane said...

I am 45 with stage 3 breast cancer...a little older than the group limits, but have met so many young people with cancer...hope you meet your goal!!

Anne Polta said...

Hi, Selena, and thank you for taking the time to focus on a population that unfortunately tends to be invisible.

I had non-Hodgkin's lymphoma when I was in my 30s, and my experience was that the vast majority of programs, services and even patient education was designed for an older population - not people my age. There were many times when what was available just didn't meet my needs.

This was back in the mid-1990s, and I'm not sure there was much recognition of the young adult cancer population. I'm happy to see this is changing, although I think we still have a long ways to go.

Good luck with your comment challenge!