Hereditary transthyretin cardiomyopathy (ATTR-CM) is a condition in which misfolded proteins accumulate in and around the heart, interfering with its proper function.
The term “cardiomyopathy” refers to any disorder of the heart muscles. Because the heart muscles are needed to pump blood effectively throughout the circulatory system, any deterioration in the function of the heart can have negative downstream effects.
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.
There is still much we do not know about ATTR-CM, and there remain significant gaps in our understanding of the genetic and molecular forces that drive the disease. In addition, there is currently no cure. For most patients, this means that heart disease is likely to get worse as the disease progresses.
Read more about ATTR-CM therapies
The silver lining here is that more studies investigating ATTR-CM are being published, some of which offer major insights into the disease. If you would like to stay on top of current scientific understanding regarding the condition, there are a number of ways you may do so.
Use academic search engines
If you would like to read source papers on ATTR-CM published in scientific journals, you may use academic search engines such as PubMed and Google Scholar. Type in keywords related to ATTR-CM, such as transthyretin, amyloidosis, cardiomyopathy and treatment. You may also narrow down your selection according to the year of publication to ensure that you are getting the latest clinical trials on the subject.
Scientific journals are usually written with other scientists or doctors in mind, so the language typically contains an abundance of medical jargon, which may or may not make much sense, depending on whether you have a scientific background. Also, many studies are relatively long as researchers cover how they conducted their trials from start to finish, including methodology, recruitment and the statistical processing of results.
Even if you have a strong scientific background and can easily comprehend the information contained in scientific journals, the information may not be immediately helpful. That is because many clinical trials report on experimental therapies that are currently unavailable and in some cases are still pending approval from the U.S. Food and Drug Administration. A breakthrough in one of these trials may not have any immediate effect on how your ATTR-CM is managed.
Speak to your doctor
The role of a doctor has transformed in recent times. No longer do doctors simply ask about your symptoms and prescribe you treatment. Instead, doctors today are trained to provide you with as much information as you need, in addition to offering reassurances in areas of doubt and anxiety.
If you would like to read more about ATTR-CM clinical trials, speak to your doctor about this during your next follow-up meeting. Your doctor likely regularly peruses the latest scientific research on the subject and will be able to recommend you to a reading list of relevant studies. Even better, your doctor will be able to give you a lay person’s summary of the findings, ensuring that you have a clear understanding of the key points of any given study.
Always remember that your doctor is on your side, and it is your doctor’s job to ensure that you have an excellent grasp of your condition and what you can realistically expect in terms of disease progression and the potential for medical breakthroughs. By voicing your desire to learn more about ongoing research, your doctor will be able to provide you with key relevant information according to the level of depth that you desire.
Read trusted patient news websites
Another way to find out more about ATTR-CM clinical trials is to visit trusted patient news websites that summarize scientific studies in a way that is both engaging and easy to understand. Beware of websites that make health claims without any scientific sources. A good medical news website will always reference clinical studies for every health claim that is put forward.
RDC Companion aims to bring to you the latest studies on ATTR-CM and present them in a short, readable format. Our team of expert writers aims to bring the most recently published clinical trials to the forefront so that you can stay ahead of the curve in understanding where ATTR-CM disease care is progressing.
A diagnosis of ATTR-CM can be deeply challenging and isolating, and it is important that you find the support you need for days where you don’t feel your best. The good news is that your doctor and the scientific community at large are expending large amounts of effort to improve patient quality of life and to make the symptoms of your disease more manageable. With the steady pace of research in this disease area, there is every reason to be cautiously hopeful about the future.
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