Transthyretin amyloid cardiomyopathy (ATTR-CM) is a disorder in which misfolded proteins accumulate in the heart and disrupt normal heart function.
These proteins stiffen the muscles of the heart and prevent it from effectively pumping blood throughout the body. Eventually, dysfunction of the heart muscles can lead to heart failure.
What is ATTR-CM?
Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare progressive disease of the heart muscle that leads to congestive heart failure. It occurs when the transthyretin protein produced by the liver is unstable. Symptoms include fatigue; shortness of breath; irregular heart rate or palpitations; swelling of the legs, ankles and stomach; brain fog; wheezing; and dizziness. It often goes underdiagnosed because of a lack of awareness and knowledge of the disease. There is currently no cure for ATTR-CM.
If you have a spouse with ATTR-CM, this diagnosis may come as a shock. ATTR-CM is typically diagnosed in adults, especially among older individuals.
Read more about ATTR-CM testing and diagnosis
Understanding your spouse’s new normal
ATTR-CM is currently an incurable disorder. While therapies can significantly alleviate symptoms and help patients regain a sense of normalcy, they do not completely stop the progression of this disorder. This means that your spouse is likely to deal with some of the same symptoms to some extent throughout life.
Typically, at the time of diagnosis, patients demonstrate some signs of heart damage and strain. These may manifest as shortness of breath, fatigue and swelling of the legs (as the circulation of the body is stalled).
In addition, misfolded protein may accumulate along the nervous system, causing problems such as strange sensations in the hands and feet. These need to be investigated and treated separately.
There is a variety of support available to adults with newly diagnosed ATTR-CM. ATTR-CM is typically managed in a multidisciplinary setting, meaning that different health care professionals from different backgrounds come together to provide the best help and support possible.
Depending on the severity of the condition, aside from medications, patients may be offered physical and occupational therapy.
If the condition is found to be genetic, genetic counseling may be offered. Furthermore, if your spouse experiences depression or anxiety as a result of this diagnosis, psychiatric help is also available
What you can do
Because every case of ATTR-CM differs in the variety of symptoms and their severity, it is important to offer a listening ear to your spouse to understand your spouse’s needs.
Tiredness and shortness of breath are common features of ATTR-CM, so your spouse may not be as physically active as he or she once was. You may need to adjust your expectations around what your spouse is able to do, either independently or with you. Offer assistance to your spouse if he or she expresses feeling too tired to complete certain tasks.
Your spouse may be prescribed new therapies that may take time to get used to. These therapies may also come with side effects. It is important for you to understand that the initial treatment period may be unpredictable at times and to offer support when your spouse talks about side effects of the therapies administered.
Seek out your own support
A number of support groups are available that you and your spouse can participate in. An example is an organization called Amyloidosis Support Groups, which links patients with support initiatives throughout the United States.
Support groups often offer vital information about treatment centers and give patients an opportunity to be part of a community whose main mission is to ensure that nobody goes through this journey alone.
The best form of support you can offer to a struggling spouse is to be present and show empathy. Sometimes, the best support you can give is in the form of shared resilience.
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