More Than Half of MyLeukemiaTeam Members Say They Feel Isolated and Alone | MyLeukemiaTeam

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More Than Half of MyLeukemiaTeam Members Say They Feel Isolated and Alone

Medically reviewed by Todd Gersten, M.D.
Written by Beth Schneider
Posted on November 29, 2021

A leukemia diagnosis can significantly impact quality of life. One of the key effects of the disease is feeling isolated and alone, according to the results of a recent survey.

To evaluate how a leukemia diagnosis affects daily activities, MyLeukemiaTeam recently surveyed 102 members about their experiences living with leukemia. Survey questions investigated leukemia’s impact on day-to-day life, as well as steps members take to manage the challenges that come with the diagnosis. Here are a few of the key takeaways from the survey:

  • Leukemia has a broad impact on quality of life, as well as on emotional well-being.
  • The majority of members are actively managing leukemia, including having meaningful conversations with their doctors, learning about and staying on recommended treatments, and seeking out information to manage symptoms and slow progression.
  • Members look to MyLeukemiaTeam to understand the experiences of others and to get information that can help make living with leukemia easier.

Impact of Leukemia

“Quality of life” is a broad term that describes a range of topics. Different types of leukemia can affect people in a variety of ways, depending on one’s age, overall health, treatment options, and prognosis. MyLeukemiaTeam sought to find out exactly how leukemia affects quality of life for the members of this site.

The majority of members (72 percent) indicated that leukemia interferes with overall quality of life. This includes the following responses:

  • 65 percent feel anxious or depressed, and 64 percent feel stressed.
  • 63 percent find it hard to exercise.
  • 60 percent find it hard to do everyday chores.
  • 59 percent find it difficult to have an active social life.
  • 53 percent can feel isolated or alone.

Managing Leukemia

Despite the impact of leukemia, MyLeukemiaTeam members who took the survey are taking a number of steps to make it easier to live with the condition.

  • About 85 percent have meaningful conversations with their doctors, and 79 percent are able to stay on the recommended medication or treatment plan.
  • About 73 percent said they are taking steps to make living with leukemia more tolerable.
  • Members are able to find information on treatments (81 percent) and symptoms (73 percent), take steps to help slow progression (72 percent), and get emotional support from family or friends (75 percent).

Resources for Understanding and Managing Leukemia

Living with a chronic condition like leukemia can sometimes mean you spend hours researching and still can’t find the information you’re seeking. According to the MyLeukemiaTeam survey, 74 percent of members indicated that they want to learn more about symptoms and what to expect, and 72 percent want to read articles about how to better manage leukemia.

MyLeukemiaTeam offers resources about the symptoms of leukemia and treatments for the condition. It’s also a good idea to find out more about mental health and leukemia, learn what you should eat when you have leukemia, and watch as an oncologist answers members’ top leukemia questions.

Connect With Others Who Understand

MyLeukemiaTeam is the social network for people living with leukemia. On MyLeukemiaTeam, more than 9,500 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

What tips or questions do you have about living with leukemia? Share your thoughts in the comments below, or start a conversation on MyLeukemiaTeam.

Posted on November 29, 2021
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Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Beth Schneider has been a market research professional for over 35 years. She focuses on both survey research and social listening analysis. Learn more about her here.

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