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Resources for Multiple Myeloma

When you’re looking for more support to deal with multiple myeloma, there are many resources to help. You can learn more about treatment options and recent research from trustworthy nonprofit organizations and about people’s experiences through online communities. Personal blogs and support groups can offer emotional support and connect you with other people with the condition.

Websites and social media can be informative and useful, but don’t use them for medical advice. Take your concerns and questions to your doctor.

There is both good and bad information online. Be careful to choose sources you can trust. Ask yourself:

  • Who runs this site? Are they selling anything?
  • Is this information based on scientific research?
  • Is this site up to date?
  • Do these claims seem too good to be true?

Here are some sources to get you started.

Nonprofit Organizations

These groups provide reliable information about multiple myeloma. You can read the latest news and get facts from experts. They can also connect you with local support groups held in person and online.

  • Multiple Myeloma Research Foundation

https://themmrf.org/

  • National Cancer Institute’s multiple myeloma information

https://www.cancer.gov/types/myeloma

  • Myeloma Crowd/HealthTree

https://www.myelomacrowd.org/

  • American Cancer Society’s multiple myeloma page

https://www.cancer.org/cancer/multiple-myeloma/

  • International Myeloma Foundation

      https://www.myeloma.org/

Blogs

Many people with multiple myeloma write about their experiences online. These blogs often chronicle details about treatments as well as other personal asides unrelated to health. Remember, they aren’t written by experts and shouldn’t be used for medical advice.

  • Multiple Myeloma Mom

https://multiplemyelomamom.wordpress.com

  • Julie’s Myeloma Moments, Musings and Living Life with a Bucket List

https://juliesmyelomamoments.blogspot.com

  • Debs’ Journey with Myeloma

      https://debsjourneywithmyeloma.wordpress.com

  • Ian’s Myeloma Blog

https://bgve.blogspot.com/

This website lists many blogs written by people with myeloma and links to recent posts in one place: https://www.myelomablogs.org

Online Communities

Many of the nonprofit organizations listed above have social media accounts on all the major platforms. Follow the links on the organization’s website to be sure get the official accounts.

Facebook. You can join multiple groups for people with multiple myeloma, or their loved ones. Most are private -- send a request and answer the questions to join. You can search the past discussions or ask your own questions.

https://www.facebook.com/groups/myelomasupport

https://www.facebook.com/groups/myelomapatients

https://www.facebook.com/groups/generalmultiplemyeloma

This public Facebook page links to news and events related to the condition.

https://www.facebook.com/Myelomateacher/

Reddit. You can read posts from multiple myeloma patients and caregivers in this dedicated forum. You don’t have to join to browse the conversation.

https://www.reddit.com/r/multiplemyeloma/

Hashtags. Search the hashtags #multiplemyeloma, #multiplemyelomaawareness or #myelomaawareness on Facebook, Instagram, or Twitter.

There’s a huge range of information on social media, so be cautious. Make sure you’re following reputable sources and getting the facts.

A few tips:

  • Look for a symbol that says the account is verified.
  • Visit the account’s bio and website for more context and details.
  • Check for the original source of information.
WebMD Medical Reference

Sources

SOURCE:

National Center for Complementary and Integrative Health: “Finding and Evaluating Online Resources.”

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