ATTR-CM: Understanding This Rare But Serious Condition

If you haven’t heard of ATTR-CM before, you’re not alone.

A rare disease with potentially fatal consequences, ATTR refers to transthyretin amyloidosis. While this medical terminology can get a little complex, basically ATTR affects something called amyloids.

What Are Amyloids?

Amyloids are proteins in our bodies. Although we need some level of proteins to survive and perform our basic functions, amyloids are different. Amyloids are abnormal proteins that can accumulate in all the wrong places.

If left unchecked or untreated, these protein build-ups can harm your organs, nerves, and everything in between. In the case of ATTR amyloidosis, the specific protein in question is called transthyretin.

Transthyretin becomes harmful due to its ability to adopt different shapes and forms, leading to the formation of clumps that can obstruct your organs. With too many of these fibrous clumps, your organs may fail to function.

ATTR-CM, or ATTR cardiomyopathy, is a specific type of ATTR affecting the heart.

How Do I Know If I Have ATTR-CM?

ATTR-CM can either be inherited from your parents or the result of aging and other related health conditions. In the case of genetics, a person might inherit a certain ‘defect’ that causes these abnormal proteins to deposit in the heart. Although rare, ATTR-CM can be fatal when it progresses too far.

If the condition is inherited, individuals typically won’t notice symptoms till their 50s or 60s. If the condition is not genetic, individuals may not see symptoms till their late 60s or 70s.

Symptoms of ATTR-CM include:

Difficulty breathing when lying down
Difficulty thinking
Swelling of the ankle, leg, or abdomen
Constant fatigue
Dizziness
Abnormal heartbeat
Shortness of breath during exercise
Blood pressure drops upon standing

If you suspect you may have ATTR-CM, or know somebody exhibiting these symptoms, do not dismiss the issue. While no cure exists for the disease, current medications and clinical trials show serious promise.

Many people may confuse symptoms of heart failure with symptoms of ATTR-CM, so it’s always important to speak to your doctor.

Talking To Your Doctor About ATTR-CM

Not sure how to approach your healthcare provider about ATTR-CM?

Don’t stress. There are many ways to determine if you have the condition. Various imaging, gene tests, bone scans, and tissue samples may be required, but in the end, you can rest easy knowing you’re getting an accurate diagnosis.

Typically a team of amyloidosis specialists will perform the tests. Because the condition is rare and unique, your primary physician will likely refer you to these experts in the field.

Research shows that Blacks have the highest risk for the genetic mutation that causes ATTR-CM. Fortunately, by catching the issue early, you can slow the progression of the disease, avoiding many of the more serious complications.

Again, while there is no cure or way to remove the amyloids, certain treatments may help reduce the accumulation rate of these proteins.

Which Treatments Work For ATTR-CM?

The most effective treatments may include drugs that bind to the problematic protein. By binding to the protein, medicines like Vyndamax can prevent the protein from misfolding. In other words, stop it from becoming abnormal.

Other medications, such as anti-inflammatory drugs have also shown effectiveness. In some cases, you may even find relief with drugs approved for other similar conditions.

While all of this may sound a little unnerving (or downright scary), don’t let that get to you! Simply paying attention to your body can go a looong way. If you notice the aforementioned symptoms, speak to your healthcare provider and explore your options.

With an accurate diagnosis and proper treatment, you can protect your heart and live a healthy, happy life!