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Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

New research allows scientists to observe abnormal cell mutation in myelodysplastic syndromes disease progression

Originally Published: 08/20/2019
Myelodysplastic syndromes (MDS) is a form of blood cancer that is caused by a range of failures of the bone marrow to produce normal functional blood cells. Through reprogramming patient blood cells, researchers recently found a new pathway to study the progression and appropriate treatment of this disease. 

August 2019 AAMDSIF Update Newsletter

Originally Published: 08/15/2019

Cancer-Related Post-traumatic Stress (PDQ®)–Patient Version

Originally Published: 07/09/2019
KEY POINTS Cancer-related post-traumatic stress (PTS) is a lot like post-traumatic stress disorder (PTSD) but not as severe. Cancer-related PTS can occur anytime during or after treatment.

Tips by a Myelodysplastic Syndromes Patient on How to Navigate the Internet When Researching Your Rare Disease

Originally Published: 06/24/2019
Jane Biehl Jane Biehl has worked as a professor, rehabilitation counselor, and a librarian. She holds three different degrees, and spreads her knowledge through freelance writing. She also has a myelodysplastic syndromes (MDS), a rare immune deficiency diagnosis, and is a cancer survivor. Currently, she writes for CURE. 

Make The Internet Your Friend, Not Your Foe!

Originally Published: 06/14/2019
I receive e-mails and questions from people all over the country because of my website and articles I write for CURE®. There are so many poignant questions and concerns: “What chemo are you on?” “What are the side effects?" “I am scared to death to start chemo after reading about the side effects from patients on the Internet.”     I just want to shout through the computer – "STOP DRIVING YOURSELF CRAZY!" I am the first person to Google any new conditions, chemo or treatment I am on. However, the key is knowing when to stop! When I was first diagnosed with myelodysplastic syndrome (MDS), I...

10 Tips for Managing Cancer-Related Stress and Anxiety

Originally Published: 05/22/2019
A cancer diagnosis can be a life-changing event, bringing with it a great deal of uncertainty. Cancer treatment can affect the physical body in the forms of weight loss, weakness, or hair loss, and can also affect mental health and wellbeing. Many patients and caregivers deal with the mental and physical effects of stress and anxiety. Common feelings include worry, fear, hopelessness, or feeling overwhelmed or out of control. Physically, you may feel tense or short of breath, suffer from headaches or muscle aches, or experience changes in your sleep and eating habits. You can learn...

Tibsovo Approved to Treat Newly Diagnosed AML With IDH1 Mutation

Originally Published: 05/03/2019
“The phase 1 results for Tibsovo demonstrated that this oral, single agent therapy can induce durable responses in newly diagnosed AML patients with an IDH1 mutation,” said Gail J. Roboz, MD, Professor of Medicine, Director of the Leukemia Program and a member of the Sandra and Edward Meyer Cancer Center at Weill Cornell Medicine and NewYork-Presbyterian/Weill Cornell Medical Center.

April 2019 Foundation Update Newsletter

Originally Published: 04/26/2019
Celebrating 35 Years, Webinars on-Demand, Patient Guides, Conferences, and more!  
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