treatment

Brian finds his way through low-risk, long-term MDS

Brian's surprise MDS diagnosis leads to an unsettling strategy: watch and wait! Listen to him describe how he makes the most from the long-term waiting with low-risk MDS in this conversation with AAMDSIF.

Using Integrative Medicine to help patients through Treatment- a recent conversation with Dr. M. Kogan

Dr. Mikhail Kogan, Medical Director of the GW Center for Integrative Medicine, discusses incorporating Integrative Medicine into a patient's treatment plan. He describes using yoga, meditation, and other techniques to help patients while they are in treatment for bone marrow failure conditions.

Soldier faces down Aplastic Anemia in 1980, paving the way for ATG treatment!

Person's Name:

Johnnie Burford

Johnnie Burford was deployed in Korea. He was a muscular 195-lb athlete, a proud member of the US Army Second Division. Nothing stopped him from performing his duty. Yet a rapid weight loss of 100 pounds, coupled with unusual bruising, alerted him that something was very wrong.

Bone Marrow Disease(s):

Aplastic Anemia

Content source:

web exclusive

Two transplants mean new life for Derek: a story of high-risk MDS, perseverance, and advocacy

Person's Name:

Derek Fakehany

Derek was turning 45 and had noticed occasional swelling in his legs. Due to a family history of heart disease, his wife, Amy, was uneasy, noticing this symptom. She encouraged Derek to see his doctor for more thorough testing.

Bone Marrow Disease(s):

Myelodysplastic Syndromes (MDS)

Content source:

web exclusive

New marrow: SCT, BMT, and GvHD with Dr. Corey Cutler, Medical Director, Stem Cell Transplantation Program at Dana Farber Cancer Institute

Learn all about the risks, benefits, and side effects of the transplantation process.

Order Patient Educational Materials

Intro:

<p>All of our materials are written in plain language and reviewed by highly respected and recognized medical doctors who are experts in bone marrow failure diseases.</p>

Research Summaries for Patients

AAMDSIF Research Summaries are clearly written summaries of the most recent research on rare blood cancers and bone marrow failure diseases presented at the most prestigious and important international scientific gatherings.

Select the research summary(s) you would like to receive (choose all that apply)

Research Summary - Aplastic Anemia and PNH Research Summaries Patients

Research Summary - MDS and AML Research Summaries for Patients

Research Summary - Bone Marrow Failure Disease Scientific Symposium for Patients

Aplastic Anemia Toolkit

To learn more, see our Aplastic Anemia Toolkit page.

Select the Aplastic Anemia Toolkit you would like to receive

Aplastic Anemia Toolkit for Patients : This 3-ring binder includes all Aplastic Anemia Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

Aplastic Anemia Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their Aplastic Anemia journey

MDS Toolkit

To learn more, see our MDS Toolkit page.

Select the MDS Toolkit you would like to receive

MDS Toolkit for Patients : This 3-ring binder includes all MDS Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

MDS Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their MDS journey.

PNH Toolkit

To learn more, see our PNH Toolkit page.

Select the PNH Toolkit you would like to receive

PNH Toolkit for Patients : This 3-ring binder includes all PNH Toolkit patient information pages and disease management tools along with related AAMDSIF publications. Patients can add their own content, such as medical records, appointment notes, and helpful articles.

PNH Toolkit for Health Care Providers : This “starter kit” in an expandable file folder includes 10 copies of all patient information pages and disease management tools along with related AAMDSIF publications. Health care providers can share the Toolkit resources with patients as appropriate for their stage in their PNH journey.

Required Information

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You understand and acknowledge that you are providing the above information, including any personally identifiable information, to AAMDS, the collection, storage and use of which is governed by AAMDS’ Privacy Policy. By checking the ‘I agree’ box below, you are agreeing to the terms and conditions of our Privacy Policy and affirming that you wish to receive the information or services identified as part of this form. If you do not agree to the terms and conditions of our Privacy Policy or do not wish to receive the information or services identified as part of this form, please check the “I do not agree” box below. Please note that AAMDS does not sell any personal information.

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Special Instructions

If you require multiple copies of any of these documents, please make note of which documents, and the specific quantities desired here.

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High Hopes Fulfilled for MDS Survivor

Person's Name:

Karen Woys

I was diagnosed with MDS (RAEB-2 - Refractory

Bone Marrow Disease(s):

Myelodysplastic Syndromes (MDS)

Content source:

web exclusive

Stacy's Aplastic Anemia Journey continues

Person's Name:

Stacy Bravo

Part 2: Immunotherapy begins!

Bone Marrow Disease(s):

Aplastic Anemia

Content source:

web exclusive

Stacy's Journey through Aplastic Anemia

Person's Name:

Stacy Bravo

This new series will follow Stacy as she navigates the world of

Bone Marrow Disease(s):

Aplastic Anemia

Content source:

web exclusive

Subscribe for Latest AAMDSIF Updates

AAMDSIF newsletter / email sign-up. You’ll learn the latest in treatments, updates on events, and topics for webinars. Discover patient stories and support groups, too, when you join the email list. Of course you can unsubscribe at any time, but we need you---together we are strong!

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