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SDS & Science Snapshots (2024-02-10)

In this issue: Why is advocacy and research on cancer prevention so critical in the fight against cancer in the SDS community?

Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email or message us on Facebook! This is all for you!

Understanding World Cancer Day and National Cancer Prevention Month: A Vital Effort for the Shwachman-Diamond Syndrome Community

This past week, on February 4, communities from all over the world came together to raise awareness about cancer prevention, cancer care, and the barriers that prevent equitable access to these life-saving measures on World Cancer Day. In fact, the whole month of February marks National Cancer Prevention Month in the United States, a time dedicated to raising awareness about cancer prevention strategies and advocating for healthier lifestyles.

In a world where cancer affects millions of lives each year, this month serves as a reminder of the importance of proactive measures in reducing cancer risk. For communities like ours affected by Shwachman-Diamond Syndrome, where the risk of developing cancer, especially myelodysplastic syndrome (MDS) or acute myeloid leukemia (AML), is significantly elevated, this awareness becomes even more critical. Studies have shown that approximately one in three individuals with SDS will develop MDS or AML by the age of 30, underscoring the urgent need for effective prevention strategies within this community.

Below is a video by Osmosis that explains what blood cancer (leukemia) is. Although AML is the biggest concern in SDS, it is important to recognize that other types of blood cancers, and several types of other cancers have been reported in SDS patients. See for example this article from France by Dr. Jean Donadieu., which we will summarize in an upcoming issue.

World Cancer Day and National Cancer Prevention Month provide an opportune moment to highlight the significance of early detection, healthy lifestyle choices, and regular screenings in reducing cancer risk, particularly for individuals with SDS. While the genetic predisposition to leukemia in SDS cannot be altered (yet!), lifestyle factors such as maintaining a balanced diet, exercising regularly, smoking cessation, and avoiding exposure to environmental toxins can play a crucial role in mitigating overall cancer risk.

Moreover, regular medical surveillance and screenings tailored to the specific needs of SDS patients are paramount. Routine blood tests, bone marrow evaluations, and genetic counseling can aid in the early detection of any abnormalities or pre-cancerous conditions, allowing for timely intervention and treatment. Although advancements in medical research have led to the development of targeted therapies and treatment protocols tailored to the unique challenges presented by many cancers, research is still ongoing about how we can better treat MDS, AML, and other cancers in individuals with SDS.

As we observe World Cancer Day and National Cancer Prevention Month, let us reaffirm our commitment to promoting health, advocating for access to comprehensive healthcare services, and supporting ongoing research efforts aimed at better understanding and addressing the complexities of cancer risk within the SDS community. By fostering a culture of prevention, education, empowerment, and active participation in all facets of research and therapy development, we can move towards a future where the burden of cancer is significantly reduced, and individuals with rare disorders like SDS can live longer, healthier lives free from the fear of cancer.


Why is research on cancer prevention so critical to progress against cancer? This resource from the National Cancer Institute provides an overview of opportunities and challenges in cancer prevention research:


The Centers for Disease Control and Prevention is working to prevent cancer through a number of innovative programs. Here’s how they are achieving progress against the disease:


For more information about World Cancer Day and National Cancer Prevention Month, you can visit these websites:


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