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What is MODY?  |  Living with MODY  |  Testing and Diagnosis  |  MODY FAQ  |  Resources

 

MODY FAQ

 

 

What causes MODY?

MODY results from mutations (errors) in a single gene, and in most cases, the mutated gene is inherited from a parent.  (Back to top)

 

How is MODY different from other kinds of diabetes?

MODY is unique because it is caused by mutations (errors) in a single gene. This makes MODY different from type 1 and type 2 diabetes, which are caused by changes in many genes and/or other factors such as being overweight or having high blood pressure.

 

Unfortunately, MODY is often confused with type 1 or type 2 diabetes. This means that patients who really have MODY may not know it and may not be getting the right type of treatment.  (Back to top)

 

Who gets MODY?

MODY usually develops during early childhood or early adulthood but sometimes remains undiagnosed until later in life. Because MODY is inherited, people with MODY may have other family members with symptoms of diabetes. Over half a million people in the United States have MODY.1  (Back to top)

 

How do I find out if I have MODY?

There is a genetic test for MODY. This test can help diagnose most people who have MODY. If you or your child has symptoms that could be caused by MODY, talk with a doctor about whether or not genetic testing might be the right choice for your family.  (Back to top)

 

What are the signs and symptoms of MODY?

Patients with MODY may have the usual signs and symptoms of type 1 and type 2 diabetes, like high blood sugar, being thirsty a lot, and urinating a lot. But many MODY patients do not have these symptoms. If you or your child has symptoms that could be caused by MODY, talk with a doctor about whether or not genetic testing might be the right choice for you or your family.  (Back to top)

 

What is the treatment for MODY?

There are several different types of MODY, and the treatment that a patient receives depends on which type of MODY they have. For example, some types of MODY can be treated with simple changes in diet and exercise. Other types of MODY are treated with oral medicines only. There are also types of MODY that must be treated with insulin. Once a person is diagnosed with MODY, his or her doctor will help that person get the right type of treatment.  (Back to top)

 

Are there different types of MODY?

MODY is caused by mutations (errors) in a single gene.  To date, scientists have identified eight genes that can cause several unique types of MODY. For example, the gene mutation that causes MODY in one person may be different than the gene mutation that causes another person to have MODY. It is important to know what type of MODY a person has because each type has its own treatment.  (Back to top)

 

How are the various types of MODY different from each other?

The main difference is how doctors treat different types of MODY.2 For example, some types of MODY can be treated with only changes in diet and exercise. Other types of MODY are treated with oral medicines only. There are also types of MODY that must be treated with insulin. Once a person is diagnosed with MODY, his or her doctor will help that person get the right type of treatment.  (Back to top)

 

Is there a cure for MODY?

There is not a cure for MODY. However, it can be treated. Patients that are diagnosed with MODY receive the right kind of treatment for their disease, so they can lead healthier lives.  (Back to top)

 

If I have diabetes, but it is well controlled by my current treatment, should I still be worried about having MODY?

If you have signs and symptoms of MODY, it is worthwhile for you to have a discussion with your physician about whether or not genetic testing for MODY might be the right choice for you.  (Back to top)

 

Who should get a genetic test for MODY?

If you or your child has symptoms that could be caused by MODY, talk with a doctor about whether or not genetic testing might be the right choice for you or your family.  (Back to top)

 

Who makes the genetic test for MODY?

Athena Diagnostics offers a genetic test for MODY called the MODY Evaluation. For more information on MODY Evaluation, please call 800-394-4493 extension 2 or email MODY@athenadiagnostics.com.  (Back to top)

 

Is MODY common?

Over half a million people in the United States have MODY. That makes it about as common as type 1 diabetes.1  (Back to top)

 

Does MODY only affect children and adolescents?

MODY usually first develops during childhood or early adulthood but sometimes remains undiagnosed until later in life.  Even adults who have symptoms of diabetes may actually have MODY.  (Back to top)

 

Is MODY a serious disease?

MODY can be serious if it is not diagnosed. A patient’s body may not produce enough insulin if they are not properly diagnosed and treated for MODY. Not having enough insulin can cause high blood sugar levels. This could hurt tissues in the body, particularly the eyes, kidneys, nerves, and blood vessels. These serious problems can be prevented if a patient is properly diagnosed with and treated for MODY.  (Back to top)

 

If I have MODY, does that mean my family members could, too?

Maybe. Because MODY is usually inherited, there is a chance that several people in one family may have MODY. If you or your child is diagnosed with MODY, it is important to talk to your doctor about whether or not other family members should also be tested for MODY.  (Back to top)

 

If one of my family members has MODY, could I have it, too?

Maybe. Because MODY is usually inherited, there is a chance that several people in one family may have MODY. If a member of your family is diagnosed with MODY, it is important to talk to your doctor about whether or not other family members should also be tested for MODY.  (Back to top)

 

What happens if a person with MODY isn’t diagnosed?

A patient’s body may not produce enough insulin if they are not properly diagnosed and treated for MODY. Not having enough insulin can cause high blood sugar levels. This could hurt tissues in the body, particularly the eyes, kidneys, nerves, and blood vessels. These serious problems can be prevented if a patient is properly diagnosed with and treated for MODY.  (Back to top)

 

What should I discuss with my doctor?

Below is a list of things you should be ready to talk about with your doctor:

  • Discuss (and maybe even measure) your blood sugar levels
  • If you have already been diagnosed with high blood sugar, how old were you when it was discovered?
  • If you have been diagnosed with type 1 diabetes, how old were you when you were diagnosed?
  • Let your doctor know if you have any close family members with diabetes
  • Your doctor may review or check your blood pressure and cholesterol
  • You and your doctor should discuss how much insulin you usually need
  • You should discuss the genetic test for MODY with your doctor – he or she will help you figure out whether or not a genetic test is appropriate

(Back to top)

  1. Raeder, H., et al., (2006) Nature Genetics, 38(1): 54-62. 
  2. Timsit, J., et al., (2005) Treat Endocrinol, 4:9-18. 
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