In this issue: Why Individuals with SDS Face a Higher Risk of Diabetes and How Families Can Take Action to Support Health
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 genetics@SDSAlliance.org or message us on Facebook! This is all for you!
Understanding the Link Between Shwachman-Diamond Syndrome and Diabetes During National Diabetes Awareness Month
November is National Diabetes Awareness Month in the United States and November 14th is World Diabetes Awareness day - a time dedicated to increasing awareness about diabetes and supporting those affected by it. Incidentally, November is also Pancreatic Disease Awareness Month. This is not a co-incidence, as the cells that regulate blood sugar levels reside in the pancreas.
Diabetes is one of the most common chronic diseases in the United States. According to the CDC, approximately 38 million Americans have been diagnosed with diabetes.
While most people with SDS experience exocrine pancreatic insufficiency, which affects digestion, some also develop diabetes. Visit the SDS Alliance website for more information about symptoms of SDS.
Types of diabetes and pancreatogenic diabetes
There are several types of "diabetes". The best known include type 1 and type 2.
Different types of diabetes have different causes and mechanisms, including:
Type 1 diabetes
The body's immune system destroys the cells that produce insulin, resulting in little or no insulin production. This is a lifelong condition that requires constant management.
Type 2 diabetes
The body may produce insulin, but the cells don't respond properly. This is the most common type of diabetes, affecting 90–95% of people with diabetes. Risk factors include genetics, being overweight, and a lack of physical activity.
Panreatogenic diabetes
Chronic pancreatitis, pancreatic cancer, and genetic disorders that affect the pancreas - such as Cystic Fibrosis - can also cause diabetes. This type of diabetes is called pancreatogenic diabetes. Pancreatogenic diabetes, also known as type 3c diabetes, is a type of diabetes that occurs when the pancreas is damaged, affecting its digestive and exocrine functions. It is often mistaken for type 2, which could lead to suboptimal treatment.
Diabetes and Shwachman-diamond Syndrome (SDS)
Shwachman-Diamond Syndrome (SDS) is a distinct genetic condition that often affects the pancreas, too. SDS patients may be at risk for this type of diabetes due to the pancreas having structural issues. How big this risk is is subject to current research. Other types of diabetes, including type 1, have been reported in Shwachman-Diamond Syndrome as well, and seem to occur at higher frequency in SDS patients than the general population. If you have concerns, please reach out to a qualified endocrinologist.
Our friends at Mission:Cure - a nonprofit focused on chronic pancreatitis - put together a comprehensive overview of pancreatogenic diabetes and hosted a webinar Dr. Belllin, an expert in the field. Watch it here:
Other types of diabetes, including type 1, have been reported in Shwachman-Diamond Syndrome as well, and seem to occur at higher frequency in SDS patients than the general population. Type 1 diabetes occurs when the body's immune system mistakenly destroys the insulin-producing cells in the pancreas. In SDS patients, this condition can occur at an early age, sometimes starting in infancy or early childhood. Interestingly, researchers suggest diabetes in SDS patients may have a milder course compared to typical cases of type 1 diabetes, and some may experience hypoglycemia (low blood sugar) rather than high blood sugar in the early stages. Scientists believe that the unique genetic changes in SDS might make these individuals more vulnerable to developing diabetes, either through problems with immune function or reduced insulin production. If you have concerns, please reach out to a qualified endocrinologist.
Symptoms of diabetes to watch for
According to the CDC, there are early signs of diabetes to watch for. If you have any of the following diabetes symptoms, see your doctor about getting your blood sugar tested:
Urinate (pee) a lot, often at night
Are very thirsty
Lose weight without trying
Are very hungry
Have blurry vision
Have numb or tingling hands or feet
Feel very tired
Have very dry skin
Have sores that heal slowly
Have more infections than usual
Be proactive when it comes to diabetes
If you or a family member has SDS, it’s essential to be proactive about blood sugar health, even if diabetes hasn’t been diagnosed. Regular check-ups with your doctor can help monitor blood sugar levels and catch any early signs of diabetes. Early detection is important, as it can lead to better management strategies, including lifestyle adjustments and, if needed, medications or insulin. Your healthcare provider may recommend regular blood sugar testing, particularly if any symptoms like increased thirst, frequent urination, or unexplained weight loss appear.
Staying healthy with SDS and managing any potential diabetes risk involves more than just monitoring blood sugar levels. Research recommends following a balanced diet with a focus on low-glycemic foods (foods that don’t cause rapid spikes in blood sugar) that can support steady blood sugar levels. For those who have already been diagnosed with diabetes, insulin therapy may be necessary, and some patients have found that insulin pumps help manage their blood sugar more effectively. Exercise and hydration can also make a big difference in maintaining health.
National Diabetes Awareness Month is a reminder to the SDS community that early action and a proactive approach to health can make a significant difference. If you’re part of the SDS community, talk to your healthcare provider about how you can keep your blood sugar levels in a healthy range and what steps are most helpful for managing or preventing diabetes. Together, we can spread awareness and support each other in staying as healthy as possible.
Talk with your doctor about making a diabetes care plan this National Diabetes Month. Managing diabetes as soon as possible after diagnosis can help prevent serious health problems. Learn more from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)!
For more information and resources about living with type 1 diabetes, visit the website of Breakthrough T1D (formerly JDRF). This website is also available in Spanish!
Disclaimer: This blog post is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have regarding a medical condition or treatment. Never disregard professional medical advice or delay seeking it because of something you have read in this post.
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