If you or someone you love is living with Friedreich ataxia (FA or FRDA), you probably already know that the condition affects coordination, movement, and balance. But Friedreich ataxia also affects many other parts of the body, including the heart, pancreas (the organ that helps control blood sugar), and muscles. Because of these wide-ranging effects, people with Friedreich ataxia have an increased risk of developing diabetes.
This article will explain how common diabetes is in people with Friedreich ataxia, why it happens, how it can affect health, and what you can do to help lower your risk or support a loved one.
Diabetes is a condition in which the body either doesn’t produce enough insulin (a hormone that helps move sugar from the blood into cells) or can’t use it effectively. As a result, the body can’t properly control blood glucose (sugar) levels.
There are two main types of diabetes:
In people with Friedreich ataxia, features of both types may be involved.
Research shows that about 5 percent to 40 percent of people with Friedreich ataxia may develop diabetes, and approximately 30 percent have impaired glucose tolerance (when the body has trouble processing sugar efficiently).
One small study of 41 people with Friedreich ataxia who were unaware they had diabetes found that 12 percent were living with it. Nearly half (49 percent) had abnormal glucose levels, which may indicate prediabetes (a condition where blood sugar levels are higher than normal but not high enough for a diabetes diagnosis).
Prediabetes can progress to type 2 diabetes over time, so it’s important to talk with your healthcare provider if you have concerns.
Individuals with Friedreich ataxia who develop diabetes often do so about 10 to 15 years after their symptoms begin.
Friedreich ataxia is caused by changes in the FXN gene, which lead to low levels of a protein called frataxin. This protein is important for keeping your mitochondria (the parts of your cells that produce energy) working properly. When mitochondria don’t function as well, the body has less energy, and oxidative stress (a buildup of harmful molecules that can damage cells) increases. Over time, this can harm cells that help control blood sugar.
Studies show that people with Friedreich ataxia often develop beta-cell dysfunction. Beta cells are the cells in your pancreas responsible for making insulin. When these cells are damaged, the body may not make enough insulin.
Friedreich ataxia also affects how sensitive your body is to insulin. Research shows that people with Friedreich ataxia often have insulin resistance, meaning their muscles, liver, and fat cells don’t respond well enough to insulin. This can make it harder for the body to lower blood sugar levels and may lead to type 2 diabetes.
One study also found that lower mitochondrial capacity (how well mitochondria produce energy) in muscles and more belly fat were linked to reduced insulin sensitivity, which may increase the risk of diabetes.
Friedreich ataxia is a multisystem condition (it affects many parts of the body) that involves the nervous system, heart, muscles, fat tissue, and cells in the pancreas — all of which help regulate blood sugar. Lower physical activity levels, heart disease, and more advanced Friedreich ataxia have been linked to a higher risk of diabetes.
Studies have identified several factors that may make diabetes more likely in people with Friedreich ataxia, including:
Being aware of these risk factors can help you and your healthcare team monitor for early signs of diabetes and take steps to manage it if needed.
When someone with Friedreich ataxia develops diabetes, the combination can increase health risks. Studies show that people with Friedreich ataxia who have diabetes tend to have more advanced disease overall.
Additionally, diabetes has been linked to shorter survival in Friedreich ataxia. One study found that diabetes can significantly affect mortality (the risk of death) in people with Friedreich ataxia.
One of the most serious ways diabetes can worsen outcomes in Friedreich ataxia is through the heart. Heart problems — especially hypertrophic cardiomyopathy (disease of the heart muscle) — are a leading cause of death in Friedreich ataxia, accounting for up to 59 percent of deaths in one study.
Having diabetes along with Friedreich ataxia may place extra strain on the heart. This can increase the risk of complications such as heart failure (when the heart can’t pump enough blood to meet the body’s needs).
Researchers are still working to understand this connection. However, diabetes and heart disease appear to influence each other, especially in people living with Friedreich ataxia.
Because Friedreich ataxia affects many systems in the body, and diabetes adds another layer of health concerns, it’s important to have a multidisciplinary care team with doctors who have different specialties. This often includes:
Working with your healthcare team as a whole, rather than treating different conditions separately, can help you better manage both Friedreich ataxia and diabetes.
There’s a lot you can do to lower your risk of diabetes or catch it early.
Ask your healthcare provider about regular diabetes screening. Your doctor may order tests to check your blood sugar levels, such as a fasting blood glucose test or a hemoglobin A1c test (a test that shows your average blood sugar over the past two to three months). Oral glucose tolerance testing (which measures how your body handles sugar over time) is another option and may detect diabetes earlier in some people with Friedreich ataxia.
Keep an eye out for diabetes symptoms, and tell your healthcare team right away if you notice:
Recognizing these symptoms early can help you get care sooner and reduce the risk of complications.
Even small steps can help lower your risk of diabetes and support overall health. Your doctor may recommend lifestyle changes such as:
Always talk with your healthcare provider before making lifestyle changes so you can create a plan that works for you.
Diabetes in Friedreich ataxia is often treated with insulin. Sometimes, doctors may also prescribe medications such as metformin (a drug that helps lower blood sugar levels) or other diabetes treatments, depending on your needs.
Managing diabetes usually involves a combination of medication, regular blood sugar monitoring, and lifestyle habits. This approach can help reduce the risk of complications such as hyperglycemia (high blood sugar), hypoglycemia (low blood sugar), and diabetic ketoacidosis (a serious condition caused by very high blood sugar and acid buildup in the body).
Living with Friedreich ataxia can already be challenging, and adding diabetes can feel overwhelming. But with the right support and information, many people can manage both conditions. Understanding the risks, getting regular screening, and working closely with your healthcare team can make a real difference. Diabetes is a manageable condition, and catching problems early can help protect your heart, overall health, and quality of life.
If you or a loved one is living with Friedreich ataxia, keep the conversation open with your doctors. Ask about screening, lifestyle strategies, and treatment options. You deserve care that considers your whole health and supports you over time.
On MyAtaxiaTeam, people share their experiences with ataxia, get advice, and find support from others who understand.
Have you been screened for diabetes as part of your Friedreich ataxia management plan? Let others know in the comments below.
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