Cardiomyopathy
Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning - Albert Einstein

image by: Children's Cardiomyopathy Foundation
HWN Suggests
The Great Need for a Cardiomyopathy Registry
There is currently no standard of care for cardiomyopathies. Treatment is done hospital by hospital, and there are limited options: invasive surgery, heart transplant or off-label use of heart drugs developed for other diseases. Not a whole lot of choice. A cardiomyopathy registry could help identify how patients fare on different treatments and could also support the development of novel therapies.
More and more is understood about the underlying genetics of Hypertrophic Cardiomyopathy and Dilated Cardiomyopathy.. The Sarcomeric Human Cardiomyopathy Registry (SHaRe) has been set up to accelerate this understanding.
Resources
Sarcomeric Human Cardiomyopathy Registry
The goal of SHaRe, a first-of-its-kind effort, is to advance the understanding of Hypertrophic Cardiomyopathy (HCM) and Dilated Cardiomyopathy (DCM), two types of heritable heart disease affecting nearly 2.4 million adults and children in the U.S. and Europe. HCM is the number one inherited cardiovascular disease. The condition is characterized by an abnormal thickening of the heart muscle, specially the left ventricle (the main pumping chamber). DCM is an inherited cardiovascular disease which predominantly affects the muscle cells of the left ventricle of the heart. The left venticle becomes dilated or enlarged, and contracts less vigorously.
Cardiomyopathies
There are three principal types; Dilated Cardiomyopathy (DCM), Hypertrophic Cardiomyopathy (HCM), Restrictive Cardiomyopathy (RCM).
How we found the gene for a rare heart disease and why it matters
We have been studying the form of heart muscle disease called arrhythmogenic right ventricular cardiomyopathy or ARVC. In this disease, the muscle of the right side of the heart is lost and replaced by scar or fat. As a result, the heart is prone to beating irregularly and fast, causing sudden death because blood is not being effectively pumped to the rest of the body. This is a rare condition that affects one in every 5000 people in the general population. People who participate in elite sport are prone to the condition if they are carriers of a genetic mutation.
I was diagnosed with heart failure at 26. Here’s the first symptom I experienced
The official diagnosis was peripartum cardiomyopathy, which is a form of heart failure that can develop during the last month of pregnancy or within the first five months after giving birth.
Scientists successfully used CRISPR to fix a mutation that causes disease. This is huge.
In a paper published in the prestigious journal Nature, a team led by Shoukhrat Mitalipov of Oregon Health and Science University described how it used CRISPR/Cas9 to correct a genetic mutation that’s linked to a heart disorder called hypertrophic cardiomyopathy in human embryos. And they did it without the errors that have plagued previous attempts to edit human embryos with CRISPR.
What Is Cardiomyopathy?
Cardiomyopathy can be caused by your genes, other medical conditions, or extreme stress. It can also happen or get worse during pregnancy. Many times, the cause is not known.
Whoa: A Broken Heart Can Actually Cause Real Health Problems
According to the American Heart Association, broken heart syndrome (also known as takotsubo cardiomyopathy) resembles a heart attack, and can happen even if you're totally healthy. Symptoms include sudden, intense chest pain and shortness of breath, usually caused by an emotionally intense event, like the death of a loved one or loss of a relationship. The biggest difference between a "normal" heart attack and broken heart syndrome, though, is that there is no blockage in the heart's arteries.
The Great Need for a Cardiomyopathy Registry
There are currently medical registries that track diabetes, congestive heart failure, depression and asthma among others. Beyond a pediatric registry, until very recently, there hasn’t been a broader registry that tracks genetic cardiomyopathies, although these conditions affect more people than ALS, Muscular Dystrophy, and Multiple Sclerosis combined.
Alcoholic cardiomyopathy: Pathophysiologic insights
ACM is characterized by dilated left ventricle (LV), normal or reduced LV wall thickness, increased LV mass, and (in advanced stages) a reduced LV ejection fraction (< 40%). There are no specific immunohistochemical, immunological, biomarkers or other criteria for the diagnosis of ACM. Therefore, the diagnosis of ACM is often considered presumptive and is usually one of exclusion.
Dilated Cardiomyopathy
If you’ll search about DCM on Internet, you will see lot of information regarding causes, symptoms and treatments of DCM, but I do not want to get into those technicalities here, I only intend to share my experience about how I felt after knowing that I have DCM at such an early age and how I managed my mind and body.
Hypertrophic Cardiomyopathy
We hear it far too often: A young athlete collapses and dies, their youth and athleticism proving to be a cruel camouflage for a time bomb ticking within their seemingly-invincible body - Nancy Brown
Pediatric Cardiomyopathy
Most cases of pediatric cardiomyopathy occur for unknown reasons (idiopathic). Pediatric cardiomyopathy may be inherited or acquired. In recent years, investigators have determined that the cause of pediatric cardiomyopathy in many children may be disruption or changes (mutations) of certain genes. Researchers have discovered more than 300 different genetic mutations that may play a role in the development of different forms of cardiomyopathy.
Postpartum Cardiomyopathy
Postpartum cardiomyopathy, also known as peripartum cardiomyopathy (PPCM), is defined as new onset heart failure between the last month of pregnancy and 5 months post delivery with no determinable cause. Postpartum cardiomyopathy is a rare cause of heart failure. Its incidence and prevalence are highly variable depending on the race and geographic regions.
Takotsubo Cardiomyopathy
The proverbial broken heart threatens anyone brave enough to put his love and trust into someone else’s hands. It’s that emotional phenomenon your mother warned you about during infamous teen angst years. But what happens when a broken heart is more than just a flood of feelings and actually enters into a physical, sometimes life-threatening state?
Cardiomyopathy Association of Australia
Cardiomyopathy is a disease of the heart which can affect anyone at any time.
Cardiomyopathy UK
Our vision is for everyone affected by cardiomyopathy to lead long and fulfilling lives. We are a specialist charity providing information, advice and support to enable anyone affected by cardiomyopathy to live as full a life as possible. We raise awareness, improve diagnosis and management of the condition and we promote medical research.
Children's Cardiomyopathy Foundation
The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.
Dilated Cardiomyopathy Research Project
We aim to advance our understanding of the genetics of dilated cardiomyopathy (DCM) by combining clinical and genetic information from a large number of families.
Huge Heart
Huge Heart is an organization dedicated to Cardiomyopathy- a weakening of the heart muscle. As of late Cardiomyopathy has been a common disease/condition amongst many athletes and young adults. It is a serious disease which can lead to complications such as sudden cardiac arrest. Our Mission is to provide a website to support people living with cardiomyopathy and to inform people about the impact that Cardiomyopathy has on health, lifestyle and longevity.
Scottish H.A.R.T.
We are a Recognised Scottish Charity involved in research into Cardiomyopathy and all heart diseases and we are currently raising funds to put a professionally manned screening unit on the road to test all young athletes and families at risk.
Share Registry
The goal of the Sarcomeric Human Cardiomyopathy Registry (SHaRe), a first-of- its-kind effort, is to advance the understanding of hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy (DCM), two types of heritable heart disease affecting nearly 2.4 million adults and children in the U.S. and Europe.
Cardiomyopathy Research Netherlands
Patients with cardiomyopathy and Researchers are working together to find a solution for the congenital and/or genetic heart (muscle) disease or cardiomyopathy. Together with worldwide Research Institutes, hospitals and other Patient Organizations, we want to represent the interests of all gene carriers and their families: by conducting scientific Research on inherited heart diseases, by tracing family members with predisposition at early stage and by striving for better treatment.
Cardiology Definitions
Cardiomyopathy represents a group of diseases of the heart, which involve the heart muscle itself resulting in contractile and relaxation dysfunction of both ventricles leading to progressive chamber dilatation and then hypocontractile walls.
CDC
Cardiomyopathy often goes undiagnosed,5 so the numbers can vary. As many as 1 of 500 adults may have this condition.6,7 Males and females of all ages and races can have cardiomyopathy. Dilated cardiomyopathy is more common in blacks than in whites and in males than in females.5 Hypertrophic cardiomyopathy is thought to be the most common inherited or genetic heart disease. While this type of cardiomyopathy occurs at many ages, in children and young adults with this condition there may be no symptoms, yet they are at high risk of sudden cardiac death.
Mayo Clinic
Cardiomyopathy is a disease of the heart muscle. The name comes from the roots "cardio" meaning heart, "myo" meaning muscle and "pathy" meaning disease. The known causes of cardiomyopathy are many, and include coronary artery disease and valvular heart disease.
MedlinePlus
Cardiomyopathy is a weakening of the heart muscle or a change in heart muscle structure. It is often associated with inadequate heart pumping or other heart function abnormalities.
National Heart Lung and Blood Institute
Cardiomyopathy refers to diseases of the heart muscle. These diseases have a variety of causes, symptoms, and treatments. In cardiomyopathy, the heart muscle becomes enlarged or abnormally thick or rigid. In rare cases, the muscle tissue in the heart is replaced with scar tissue.
Nature.com
Cardiomyopathies are diseases of the heart muscle. This group of pathological conditions includes dilated cardiomyopathy, hypertrophic cardiomyopathy, restrictive cardiomyopathy, arrhythmogenic right ventricular cardiomyopathy, and left ventricular noncompaction cardiomyopathy. They can be hereditary or acquired conditions.
Texas Heart Institute
About 500,000 Americans have cardiomyopathy, and many do not even know they have the condition. Cardiomyopathy is a leading cause of heart failure and the most common reason for needing a heart transplant.

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