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Q: What is Marrowforums?
A: Marrowforums is a website for patients with bone marrow failure diseases, and their families, friends, and caregivers. Marrowforums hosts a forum-style discussion group for patients and the people who support them, as well as providing basic medical information and resources. More about Marrowforums...
Q: What are bone marrow failure diseases?
A: Normal bone marrow produces blood cells that the body needs: red cells to carry oxygen, white cells to fight infections, and platelets to clot blood. With bone marrow failure diseases, these blood cells can be absent or insufficient, or the bone marrow may produce abnormal cells. This can be life-threatening.
Bone marrow failure diseases include aplastic anemia (AA), myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), pure red cell aplasia (PRCA), and several types of inherited bone marrow failure diseases.
Q: Why do we need a discussion group just for these diseases?
A: Bone marrow failure diseases are rare, in contrast with more common blood diseases such as leukemia. Their symptoms, management, and treatment differ from other types of diseases. This site focuses on the issues surrounding these diseases. You are unlikely to meet another AA, MDS, or PNH patient in your own neighborhood, so a web-based discussion group is an effective way to interact with others in similar situations.
Q: What are the forum discussions about?
A: Any topics that concern these patients: medical issues, family issues, coping strategies, financial issues, insurance issues, and many more.
Topics are determined by forum members, not by Marrowforums. Commercial advertising is not permitted.
Q: How do the discussions help patients?
A: Although medical professionals can diagnose and treat these illnesses, there are many other day-to-day issues that patients face. For example, they must make decisions about their lives, deal with family members, and try to keep their spirits up. Patients benefit from person-to-person communication with their peers.
Because patients are all over the world, the diseases are rare, and many patients are unable to travel or cannot afford it, face-to-face meetings are hard to arrange and at best infrequent. Forums allow person-to-person communications 24 hours a day. Still, we encourage you to attend any conferences or in-person support groups that you can. There are strong benefits to talking to other patients face to face.
Q: How do the discussions help family and caregivers?
Family members and caregivers have their own issues to face, such as knowing how best to support the patient, how to keep track of appointments or medications or blood counts, and how to make sure they have time for themselves too. Personal discussions help them for the same reasons they help patients: they let family members and caregivers relate to others in similar situations.
Q: What is the difference between www.marrowforums.org and forums.marrowforums.org?
A: www.marrowforums.org is the main Marrowforums site. It contains information for new patients, a description of the site, basic medical information, a set of medical resources, and the FAQ section. The latest news stories and forum discussions are listed on the right side of the home page.
forums.marrowforums.org is the home of the Marrowforums discussion forums. There are new forum posts every day as forum members discuss the issues and questions of concern to them. You are welcome to participate!
Q: What does it cost to use Marrowforums?
A: It's free. Anyone may browse or search the forums. Free registration is required to post comments in the forums. We don't have ads, we don't sell anything, and we don't send unsolicited email.
Q: Who created Marrowforums and why?
A: Marrowforums was created by three members of the bone marrow failure patient and support community, and is run by two of them. They were involved with the diseases for many years and had experience running the AA-MDS-TALK listserv and volunteering for the Aplastic Anemia & Myelodysplastic Syndromes International Foundation (AA&MDSIF). They were each helped by the AA&MDSIF and by other patients, and wanted to provide help to others in turn. See Meet the Administrators.
Q: How do I contact Marrowforums?
A: You can post Site Comments, click the Send Alert Message icon next to a forum post to send an Alert Message to the administrators, send a Private Message to the administrators, or email us.
Details, and guidelines about which method to use, can be found on the Contact page.
Q: Why does a site about serious diseases have smiling mascots?
|A: "Red" and "White" are blood drops who represent optimism and community. When you can't smile, they smile for you. When you are having a rough day, they hope your next day will be better and, like our forum members, are ready to support you. They also represent our community's hope for advances in bone marrow failure disease treatment and success in finding cures.|
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