Online Cancer Community - December 23, 2015

Activate Your Support Network Online

PETE SHEEHAN

A cancer diagnosis can overwhelm entire families in addition to the physical and emotional toll it takes on patients. Many questions are raised that often go unanswered, at least initially. The sheer volume of communication needed to provide updates to family members and friends can also be overwhelming.

MyLifeLine.org - a Denver-based nonprofit online organization focused on social and emotional support services for patients with cancer - was created to help solve this problem.

The goal of MyLifeLine.org is to reduce the stress and anxiety associated with a cancer diagnosis. We connect patients with cancer and caregivers to their community of family and friends for social and emotional support. We provide free personalized websites, communication services, cancer resources, and tools that allow patients and caregivers to share their journey, receive support, and focus on healing.

STAYING CONNECTED

MyLifeLine.org was founded in 2007 by Marcia Donziger, who was diagnosed with ovarian cancer in 1997 at age 27. She felt overwhelmed by the volume of communication at a time she was struggling with cancer. Marcia couldn’t physically return all the phone calls herself, and found it emotionally draining to repeat the information about her condition again and again.

In 2003, Marcia learned of a special young woman, Lori Arquilla Andersen, who had just been diagnosed with cancer. Marcia was inspired by Lori’s strength through crisis and by the way she kept in touch with her family and friends during her illness.

Through her personal website, Lori posted her progress and inspired those who followed her struggle. In time, Lori’s support network expanded beyond her imagination. People visited her website to write encouraging messages, offer help to her family, or just stay updated and keep her in their prayers.

Inspired by Lori and her family, Marcia saw the tremendous benefit for patients with cancer to communicate via a personal website. Sharing updates and managing messages via a central website can help everyone touched by cancer to deal with it. Marcia saw an opportunity to make a difference and extended the benefit of free, personal websites to all patients with cancer. Thus was born MyLifeLine.org as a nonprofit organization.

BUILD YOUR SUPPORT COMMUNITY

I became involved with MyLifeLine.org through my experiences in technology to help patients and caregivers. I live in Denver, CO, with my wife and 2 young children, but the rest of my extended family is on the East Coast. When a family member experiences a health issue it can be difficult to travel to see them and provide support in person.

Today’s technology allows every patient to stay connected to their entire support community, and each member of that community has the ability to stay connected with the patient. Research has shown that a thriving support community is beneficial to a patient’s healing process:

  • A recent study of 735,000 patients with cancer showed that improving social support for patients may be as important as providing effective therapy, and it is less costly to develop and implement1
  • Receiving practical support increases the likelihood of patients’ adherence to their medications 3.6 times2

Patients are not the only ones who can benefit from a strong support community. Caregivers, too, need to be supported as much as the patient. It can be equally overwhelming to be the primary person supporting the patient and managing the medical care, appointments, medications, and transportation on top of lives that are already busy.

WHAT PATIENTS & THE ONCOLOGY COMMUNITY ARE SAYING

MyLifeLine.org recently partnered with the American Cancer Society to provide websites and social support services to patients and members, and the American Cancer Society will direct patients and caregivers to MyLifeLine.org’s services.

Since our launch in 2007, we have helped more than 144,000 people affected by cancer globally and are on track to add 1,500+ new patients and 18,500+ new family members and friends to our list of registered guests in 2015.

I encourage anyone facing cancer, or anyone who knows someone with cancer, to consider setting up a free site with MyLifeLine.org. We’ve heard from many people how it has changed their experience with cancer in a positive way.

  • A family living across the country was able to know when their loved one had a chemo appointment.
  • A small town rallied around a hardworking patient to raise thousands of dollars for their medical care costs.
  • A single woman was able to schedule meals delivered to her from eager-to-help friends.
  • One patient said he loved MyLifeLine.org because he was able to have a sense of normalcy with his friends; since they were up to date on his condition, they could spend time together without asking about his cancer.

MyLifeLine.org goes beyond the personal websites to connect patients and caregivers to their support community, and allow them to gain control, be empowered, and become their own advocate. The service is free to all people affected by cancer.

Key Points
  • MyLifeLine.org connects patients with cancer and caregivers to their family and friends for social and emotional support via online technology
  • This group provides free personalized websites, communication services, cancer resources, and tools for patients and caregivers
  • Caregivers, too, need to be supported as much as the patient
  • Research shows that having social and emotional support is as important as cancer treatment and increases the likelihood of patients taking their medications as prescribed
References


1. Kissane DW. Marriage is as protective as chemotherapy in cancer care. Journal of Clinical Oncology. 2013;31:3852-3853.

2. DiMatteo MR. Social support and patient adherence to medical treatment: a meta-analysis. Health Psychology. 2004;23:207-218.

PETE SHEEHAN
Chief Executive Officer
MyLifeLine.org, Denver, CO

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