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My Son's Companion; Cardiomyopathy (Part 2 of 2)

Types of Cardiomyopathy, cont.

Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC)

This is when heart muscle cells are not joined together properly, and so they die and get replaced by scar tissue or fat. This makes the heart muscle stretched, thinner and weaker, making it less able to pump blood out of the heart as well as it should.

Restrictive Cardiomyopathy (RCM)

This is when the heart muscle becomes stiff and cannot relax properly, which makes it harder for the top chambers to fill with blood. The chambers then become enlarged and blood cannot flow properly.

Left Ventricular Noncompaction Cardiomyopathy (LVNC)

This is when there is a problem with how the heart muscle develops in an unborn baby. The muscle cells do not compact (tightly pack) together as normal, which causes small indentations in the muscle and it appears spongy. This affects how the heart works.

Takotsubo Cardiomyopathy (TTC)

This usually happens during a time of extreme stress. The left
ventricle becomes enlarged and weakened. It is often only temporary and usually gets better with time.

Peripartum Cardiomyopathy (PPCM)

PPCM is pregnancy related and affects women towards the end of pregnancy or in the first few months after delivery.  The condition affects the heart’s ability to pump properly.

Research and Progress to Date

Pediatric cardiomyopathy is a chronic disease with no known cure or treatment to prevent or eliminate the existing disease. Unlike other congenital heart conditions, the heart cannot be "repaired" by surgery or drug therapy.

Most of the research done to date has been in the preliminary stages of the genetic investigation, with attempts of identifying and characterising the genetic mutations and other abnormalities responsible for the disease.

It is believed that the greatest medical advances would arrive once the genetic defect responsible for the different forms of  cardiomyopathy is found. Such a find would pave the way for more definitive interventions and maybe preventative measures.

By understanding the underlying cause of this rare condition, the occurrence rate, and mortality rate could be reduced.

Vital Facts

  • Different forms of the disease - Cardiomyopathy is a chronic disease of the heart muscle. Dilated and hypertrophic cardiomyopathy are the most common forms with restrictive and arrhythmogenic right ventricular cardiomyopathy occurring less frequently in children.
  • Can affect any child - Cardiomyopathy can occur in any child regardless of age, race, gender or socioeconomic background. 
  • Minimal lifestyle restrictions - Fortunately, many children with cardiomyopathy can lead a relatively normal life with few lifestyle restrictions. 
  • Search for a cure continues - Unlike other congenital heart conditions, there is no surgical treatment or cure that can repair the damaged heart or stop the progression of the disease. The first treatment option is usually medication to improve the functioning of the heart.

Charities and Support Organisations

In addition to the large volume of online resources; there are a number of charities and foundations providing the latest cardiomyopathy news, fundraising and providing that much-needed support for those affected by the condition.

A short list of the organisations encountered during my research is provided below; which might be a good starting point for yourselves.

My Son's Bright Future

So, at the end of my initial research, it would appear my son's travelling companion will be with him for some time. However, we are encouraged by the strides being made within the medical sector and have faith that given time, cardiomyopathy would just be a footnote in my son's journey and bright future.

Lastly, we have found Proverbs 3:5 has been of great comfort during this time and hope it may also be of help to you if faced with a similar challenge.