Marrowforums

Thanks to the Internet, patients can get advice directly from other patients with the same diseases.  For bone marrow failure diseases, Marrowforums is a site where you can do just that.

Marrowforums was founded and is administered by former AA&MDSIF Board member and bone marrow failure disease survivor, Ruth Cuadra and her husband Neil.  They have created this free online forum where aplastic anemia, MDS, and PNH patients, caregivers, and family members can find each other, make personal connections, and trade information and support.

Marrowforums is a place to find your peers: the people who had the same shock of diagnosis, who were as confused as you about a disease they had never heard of, who had to learn all of the medical jargon, who underwent the same treatments, who made the same lifestyle changes, and who have similar hopes and fears.

What can patients do for each other?  By sharing their stories and experiences, patients and caregivers reveal the personal side of bone marrow failure.  Doctors are medical experts, but they usually can’t take the time to help you cope with your life as a whole.  Other patients and caregivers know what you are going through and will listen and talk with you about the problems you face.

How does Marrowforums work?  It’s a discussion site. At any given time, there are dozens of active conversations-about the diseases, symptoms, treatments and side effects, day-to-day problems, methods for coping-or anything else that members want to discuss.  You can ask questions, get answers, or give answers.

To begin reading the conversations, go to www.marrowforums.org and click "Forums".  To ask a question or post a comment, click "Register" to sign up for a free account.  That’s all it takes to become a forum member and join the community.

What kind of questions can I ask?  Anything you’d ask another patient you met in your neighborhood:

  • How can I help my dad who was just diagnosed?
  • What’s a CBC?
  • Will my doctor mind if I get a second opinion?
  • Do patients with low white counts change their diets?
  • Has anyone had multiple ATG treatments for aplastic anemia?
  • What should I tell my coworkers?
  • Are there any MDS patients in my city?

You can also ask questions about treatment choices, but remember that you’re getting personal opinions from other patients and caregivers, not authoritative advice from doctors.  Marrowforums and similar sites should not be used to make medical decisions, but instead to learn from others who have faced the same situations.

What’s the catch?  There is no catch.  Marrowforums was created in 2006 by bone marrow failure patients and caregivers as a community where other patients and caregivers can inform and support each other.  Why not add hundreds of other patients to your personal support team? If you feel that you owe something to that community for the help you get, pay it back by helping other patients as they’ve helped you!

Where can I learn more? Go to www.marrowforums.org. Browse the discussions, sign-up for free a membership, review the Frequently Asked Questions, or simply click "Help"!