ATTR-CM (transthyretin amyloid cardiomyopathy) is a rare heart condition that can lead to heart failure. However, with an early and accurate diagnosis, ATTR-CM is often treatable.
One big question that patients have is what caused this disease? As with many serious health issues, sometimes it’s hard to pinpoint exactly, but usually this disease is caused by your type of lifestyle/diet, genetics, or a mix of both.
Whether you have been diagnosed early or very late in the game with this condition, changing your lifestyle habits is crucial to extending how long you can live with this type of heart disease, especially when your heart becomes too weak to effectively pump blood throughout the body.
Adjusting Your Lifestyle with ATTR-CM
Because ATTR-CM is often misdiagnosed or diagnosed long after symptoms first appear, it has been difficult to establish a reliable life expectancy for the condition if it is diagnosed and treated early in the disease progression.
“ATTR cardiomyopathy is, unfortunately, an under-diagnosed condition,” says New York cardiologist Aeshita Dwivedi, MD, who adds that greater awareness of ATTR-CM is leading to more diagnoses, which is also resulting in people starting treatment earlier in the disease process.
Some of what you will need to know can be learned by participating in a cardiac rehabilitation program. If you have been diagnosed with ATTR-CM ask your doctor about prescribing you rehab to learn about diet, exercise, medication adherence and other aspects of living with a heart condition.
Related: How Lifestyle Changes Can Help With Managing Heart Failure
Dr. Dwivedi explains that when confronted with the signs of ATTR-CM, like those of heart failure, it’s essential that you begin working closely with your cardiologist and follow the doctor’s advice about medication, checkups, lifestyle, and give thoughtful consideration to discussions of procedures, such as having a pacemaker or pump implanted.
Getting Diagnosed with ATTR-CM
“Number one would be to see your doctor regularly,” Dr. Dwivedi says. “It is important to seek medical care for this condition, because we have good options and can change lives. Second would be talk to your doctor if any of your symptoms change. You would rather know sooner rather than later, before things get worse and when you may need hospitalization.”
Related: What is the Heart Condition, ATTR-CM? What are the Symptoms?
She also recommends shifting to a heart-healthy diet that includes limited sodium intake and fats. This diet will help you achieve and maintain a healthy weight. Exercise is also important, though your capacity for physical activity will be limited. Be sure to discuss your exercise limits and concerns with your doctor or a cardiac rehab specialist.
“Getting your steps in for the day and doing moderate activities very important,” Dr. Dwivedi says. If exercise is new to you and you are unsure where to start, reach out to your doctor for a supervised exercise program for you to get comfortable being active.
ATTR-CM and Genetics
In general, people with a family history of heart disease or other conditions should be extra vigilant for symptoms of ATTR-CM, which include those associated with heart failure, including:
- Awareness of a laboring or racing heart
- Coughing when lying down
- Fatigue
- Fluid retention or swelling, particularly in the lower limbs
- Lightheadedness
- Shortness of breath
There are two types of ATTR-CM:
- Hereditary ATTR-CM involves a mutation of the transthyretin gene, which leads to amyloid deposits in the heart and elsewhere in the body. It tends to run in families and may cause symptoms to appear starting at age 20 or much later in life. According to the American Heart Association, hereditary ATTR-CM occurs more often in areas of Japan, Portugal, and Sweden, and in the U.S., this type of ATTR-CM affects African Americans at higher rates than other groups.
- Wild-type ATTR-CM doesn’t involve a gene mutation and typically starts to cause symptoms when someone is in their 60s or older. The origins of wild-type ATTR-CM aren’t well understood, and this could mean that the condition is under-diagnosed. An individual with wild-type ATTR-CM may have no symptoms or mild symptoms for a long time, while someone else with the condition may go on to develop severe heart failure.
Males are at higher risk than females for both types of ATTR-CM. And while hereditary ATTR-CM may present with symptoms at a young age, older adults are generally at higher risk for both types.
Bottom line, regardless of how you got to this point, what matters is that your condition has been accurately assessed, and you are in the care of a doctor who can try to help you achieve the best case scenario situation while living with ATTR-CM.
Contributing by SurvivorNet staff.
Learn more about SurvivorNet's rigorous medical review process.
ATTR-CM (transthyretin amyloid cardiomyopathy) is a rare heart condition that can lead to heart failure. However, with an early and accurate diagnosis, ATTR-CM is often treatable.
One big question that patients have is what caused this disease? As with many serious health issues, sometimes it’s hard to pinpoint exactly, but usually this disease is caused by your type of lifestyle/diet, genetics, or a mix of both.
Read More Whether you have been diagnosed early or very late in the game with this condition, changing your lifestyle habits is crucial to extending how long you can live with this type of heart disease, especially when your heart becomes too weak to effectively pump blood throughout the body.
Adjusting Your Lifestyle with ATTR-CM
Because ATTR-CM is often misdiagnosed or diagnosed long after symptoms first appear, it has been difficult to establish a reliable life expectancy for the condition if it is diagnosed and treated early in the disease progression.
“ATTR cardiomyopathy is, unfortunately, an under-diagnosed condition,” says New York cardiologist Aeshita Dwivedi, MD, who adds that greater awareness of ATTR-CM is leading to more diagnoses, which is also resulting in people starting treatment earlier in the disease process.
Some of what you will need to know can be learned by participating in a cardiac rehabilitation program. If you have been diagnosed with ATTR-CM ask your doctor about prescribing you rehab to learn about diet, exercise, medication adherence and other aspects of living with a heart condition.
Related: How Lifestyle Changes Can Help With Managing Heart Failure
Dr. Dwivedi explains that when confronted with the signs of ATTR-CM, like those of heart failure, it’s essential that you begin working closely with your cardiologist and follow the doctor’s advice about medication, checkups, lifestyle, and give thoughtful consideration to discussions of procedures, such as having a pacemaker or pump implanted.
Getting Diagnosed with ATTR-CM
“Number one would be to see your doctor regularly,” Dr. Dwivedi says. “It is important to seek medical care for this condition, because we have good options and can change lives. Second would be talk to your doctor if any of your symptoms change. You would rather know sooner rather than later, before things get worse and when you may need hospitalization.”
Related: What is the Heart Condition, ATTR-CM? What are the Symptoms?
She also recommends shifting to a heart-healthy diet that includes limited sodium intake and fats. This diet will help you achieve and maintain a healthy weight. Exercise is also important, though your capacity for physical activity will be limited. Be sure to discuss your exercise limits and concerns with your doctor or a cardiac rehab specialist.
“Getting your steps in for the day and doing moderate activities very important,” Dr. Dwivedi says. If exercise is new to you and you are unsure where to start, reach out to your doctor for a supervised exercise program for you to get comfortable being active.
ATTR-CM and Genetics
In general, people with a family history of heart disease or other conditions should be extra vigilant for symptoms of ATTR-CM, which include those associated with heart failure, including:
- Awareness of a laboring or racing heart
- Coughing when lying down
- Fatigue
- Fluid retention or swelling, particularly in the lower limbs
- Lightheadedness
- Shortness of breath
There are two types of ATTR-CM:
- Hereditary ATTR-CM involves a mutation of the transthyretin gene, which leads to amyloid deposits in the heart and elsewhere in the body. It tends to run in families and may cause symptoms to appear starting at age 20 or much later in life. According to the American Heart Association, hereditary ATTR-CM occurs more often in areas of Japan, Portugal, and Sweden, and in the U.S., this type of ATTR-CM affects African Americans at higher rates than other groups.
- Wild-type ATTR-CM doesn’t involve a gene mutation and typically starts to cause symptoms when someone is in their 60s or older. The origins of wild-type ATTR-CM aren’t well understood, and this could mean that the condition is under-diagnosed. An individual with wild-type ATTR-CM may have no symptoms or mild symptoms for a long time, while someone else with the condition may go on to develop severe heart failure.
Males are at higher risk than females for both types of ATTR-CM. And while hereditary ATTR-CM may present with symptoms at a young age, older adults are generally at higher risk for both types.
Bottom line, regardless of how you got to this point, what matters is that your condition has been accurately assessed, and you are in the care of a doctor who can try to help you achieve the best case scenario situation while living with ATTR-CM.
Contributing by SurvivorNet staff.
Learn more about SurvivorNet's rigorous medical review process.
