*author note..I understand these types of topics are tough to talk about. It not something people want to think about and hope if they ignore it, the problem will go away. I am not trying to make people feel uncomfortable. I just want to get this information out there so EB families have the information and tools they need to make the best decisions they can for their health or for the health of their child.
There are many complications of severe forms of EB that can arise at any time. One of them is called Cardiomyopathy- which is a disease that weakens and enlarges your heart muscle.
There are many complications of severe forms of EB that can arise at any time. One of them is called Cardiomyopathy- which is a disease that weakens and enlarges your heart muscle.
While I have no
personal experience with this condition, I do have some friends with EB who
have or had this complication and I have been reading up on it to learn more
about what they are going thru. Cardiomyopathy seems to be a silent, and
in many cases, a deadly complication of EB. In the past week I have discovered
that many with EB have no idea this is a complication that could affect them,
let alone know the symptoms of it.
The three types of
cardiomyopathy are:
Dilated cardiomyopathy. This is the most common type of cardiomyopathy. In
this disorder, the pumping ability of your heart's main pumping chamber — the
left ventricle — becomes less forceful. The left ventricle becomes enlarged
(dilated) and can't effectively pump blood out of the heart. Although this type
can affect people of all ages, it occurs most often in middle-aged people and
is more likely to affect men. Some people with dilated cardiomyopathy have a
family history of the condition.
Hypertrophic cardiomyopathy. This type involves abnormal growth or thickening of
your heart muscle, particularly affecting the muscle of your heart's main
pumping chamber. As thickening occurs, the heart tends to stiffen and the size
of the pumping chamber may shrink, interfering with your heart's ability to
deliver blood to your body. Hypertrophic cardiomyopathy can develop at any age,
but the condition tends to be more severe if it becomes apparent during
childhood. Most affected people have a family history of the disease, and some
genetic mutations have been linked to hypertrophic cardiomyopathy.
Restrictive cardiomyopathy. The heart muscle in people with restrictive
cardiomyopathy becomes rigid and less elastic, meaning the heart can't properly
expand and fill with blood between heartbeats. While restrictive cardiomyopathy
can occur at any age, it most often tends to affect older people. It's the
least common type of cardiomyopathy and can occur for no known reason
(idiopathic). The condition may also be caused by diseases elsewhere in the
body that affect the heart.
Per the Mayo Clinic's web site here
are some symptoms of Cardiomyopathy
Some people who develop cardiomyopathy have no signs and symptoms during
the early stages of the disease. But as the condition advances, signs and
symptoms usually appear. Cardiomyopathy symptoms may include:
Breathlessness with exertion or even at rest
Swelling of the legs, ankles and feet
Bloating of the abdomen due to fluid buildup
Fatigue
Irregular heartbeats that feel rapid, pounding or fluttering
Dizziness, lightheartedness and fainting
Swelling of the legs, ankles and feet
Bloating of the abdomen due to fluid buildup
Fatigue
Irregular heartbeats that feel rapid, pounding or fluttering
Dizziness, lightheartedness and fainting
No matter
what type of cardiomyopathy you have, signs and symptoms tend to get worse
unless treated. In certain people, this worsening happens quickly, while in
others, cardiomyopathy may not worsen for a long time.
During my research of articles about cardiomyopathy and EB, I found the
following articles that I found to be very interesting and informative. I
hope that those with severe EB or have a child with severe EB will take time to
educate themselves about this complication and talk with their doctors to
determine their risks and what tests should be do to check for the issue. Being
proactive is the best thing you can do when it comes to complications of EB!
Especially for complications that can be silent until its too late.
**NEW** A recent study linking EB and heart issues
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