MDS - Myelodysplastic Syndrome

(This blog was not originally intended to focus on MDS. However, I was advised to narrow my focus. Since I am an MDS survivor and bone marrow transplant recipient as well as a registered nurse, I think it is a good idea.
I'M WORKING ON MAKING THIS PAGE MUCH MORE INFORMATIVE

If you need to find information on MDS - Myelodysplastic Syndrome - go to
AAMDS - APLASTIC ANEMIA and MYELODYSPLASTIC FOUNDATION

Myelodysplastic Syndrome (MDS) is a bone marrow "failure" condition in which blood cells, white-, red-, and platelet-cells, do not mature to differing degrees.

It is different from Aplastic Anemia.  AAMDS (aamds.org) is a great resource for MDS, aplastic anemia, and PNH.  At AAMDS, you can learn about these conditions as well as find support for yourself or your loved one.

MDS has been called "pre-leukemia", but it does not always lead to leukemia and it does not always lead to premature death.  It is more often a condition effecting older people, but sometimes infants, children, and young adults have this/these conditions.

As with many medical conditions, there is a great deal of fear that comes with the diagnosis, but this does not mean a person and their family and friends can stop learning how to make their lives better.

Learning allows us to become part of the healthcare team and learning allows us to go far beyond the narrow information that physicians, nurses, and other healthcare professionals can provide, though they are a place to start.

ABOUT BONE MARROW TRANSPLANTS

A Timeline of a Bone Marrow Transplant from BeTheMatch.Org
Timeline of a BMT at the Seattle Cancer Care Alliance

CLINICAL STUDIES

FOR THOSE WITH A P53 MUTATION IN THEIR "NEXT GENERATION SEQUENCING" RESULTS:
Clinical Studies.gov  -- P53 restoration small molecule in phase 3 trial Jan20, 2020

MDS SUPPORT GROUPS
AAMDS - Support Groups

LINKS AND RESOURCES

• Be The Match - A premier bone marrow transplant resource
• Inspirational Stories AAMDS.org Aplastic Anemia & Myelodysplastic Syndrome Foundation
• International MDS organization MDS - Alliance
• Israeli Association for MDS Tamid-The Israeli Association for Myelodisplastic Syndrome/
• MDS Centers of Excellence and Contacts in the United States MDS Foundation MDS Centers of Excellence Map
• MDS Foundation
• National Cancer Institute

• Definitions and calculators
• Cytogenetics
• IPSS-R Calculator - MDS-Foundation -- to know your risk level

SELECTED TREATMENTS

TREATMENT FOR TP53 MUTATION APR-246 & Azacitidine for the Treatment of TP53 Mutant Myelodysplastic Syndromes (MDS)

EDUCATIONAL VIDEOS

• What is a bone marrow (BMT) or a stem cell transplant (SCT)?

Allow video to continue to next presentation to learn more about transplants

• Exercise is supremely important

From TedEd

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