family / friend

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.

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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.

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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.

Special instructions

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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!

A Clinical Trial Saves her Life! with Theresa Elgin

Persistence, Advocacy, and a Clinical Trial: Theresa is now a Survivor!

Ravulizumab-cwvz

Ravulizumab-cwvz (Ultomiris®) is a drug approved by the U.S. Food and Drug Administration (FDA) in 2018 to treat PNH. ULTOMIRIS® is a long-acting C5 inhibitor that works by inhibiting the C5 protein in the terminal complement cascade. ULTOMIRIS® is a prescription medicine called a

Sarah was ready for a great career, but the diagnosis changed her plans... temporarily!

Imagine being ready to launch your career, then being thrown off course by both aplastic anemia and PNH, all at once! Listen to Sarah's story of her path to survivorship here.

Kat Edmonds knows patients, but more importantly, she coaches them on how to make the best decisions for their own lives. Find out more here:

Kat hears patients ask: "I have this bone marrow failure problem ... how is this going to affect me and loved ones? What does this mean for my life?" Discover how Kat helps walk patients through diagnosis, treatment, and survivorship.

Busy, happy retirement shaken by MDS - AML: Shirley's story of survivorship!

From a sunny, lively retirement to MDS then AML? That was Shirley's life! After treatment in a Clinical Trial, she is in remission, still playing the accordion! This is her story.

Is sleep that important for bone marrow disease patients? Discover Dr. Mekonnen's insights here:

Can sleep affect your treatment for bone marrow failure diseases? Dr. Asefa Mekonnen explains why sleep is important for patients as well as when to tell your doctor that you aren't sleeping well. Check this out!

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