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Actor and television host Shekhar Suman recalled the loss of his eldest son, Aayush, who died at the age of 11 in 1995 after suffering from a rare heart condition called endomyocardial fibrosis (EMF). In a recent interview with The Lallantop, Suman spoke about the family's struggle during his son's illness and the helplessness he experienced while watching the child's health deteriorate. He recalled Aayush pleading with him to save his life, saying, "Papa, please save me."
He also said, "I still don't know how that tragedy happened to us. But I guess that's destiny. There's no bigger tragedy that can befall parents than losing their children. Even now, we dedicate 2-3 hours just thinking and talking about him, every day. It's a wound that will never heal."
Suman also recalled how his son's illness coincided with a difficult period in his professional life, when he was struggling to find work. With Aayush needing treatment, he eventually took up television projects despite initially wanting to focus on films. Read on to know more about the rare heart condition.
What Is Endomyocardial Fibrosis?
Endomyocardial fibrosis is a rare type of heart disease in which abnormal fibrous tissue, similar to scar tissue, builds up along the inner lining of the heart's chambers. This tissue makes the heart less flexible and interferes with its ability to fill with blood properly.
The condition can affect the left ventricle, the right ventricle or both. As the scar tissue builds up, the heart may struggle to pump enough blood to meet the body's needs. In advanced cases, this can lead to heart failure, abnormal heart rhythms and blood clots.
What Causes Endomyocardial Fibrosis?
The exact cause of EMF is not known. Researchers believe several factors may contribute to its development.
- Infections: Certain parasitic infections have been linked to the condition. However, the relationship is not fully understood in every case.
- Nutritional deficiencies: Low levels of certain nutrients, including protein and magnesium, have been suggested as possible factors
- Environmental factors: Exposure to some environmental toxins or pollutants can also be causes
- Inflammation: Inflammation inside the heart may play a role in the damage that eventually leads to scar tissue formation
These are possible contributing factors, not proven causes in every patient.
What Are The Symptoms Of Endomyocardial Fibrosis?
The symptoms can vary depending on which part of the heart is affected and how advanced the disease has become. Common warning signs include:
- Shortness of breath: A person may feel breathless during physical activity or even while resting as the heart struggles to function properly.
- Persistent fatigue: Reduced blood flow can leave a person feeling unusually tired or weak.
- Swelling: Fluid may accumulate in the legs, ankles or abdomen because of changes in blood circulation.
- Abdominal discomfort: Fluid buildup or enlargement of the liver can cause the abdomen to appear swollen.
- Irregular heartbeat: Changes in the heart's structure and electrical activity may cause abnormal heart rhythms.
- Signs of heart failure: In advanced cases, symptoms can include difficulty breathing while lying down and worsening fluid retention.
How Is Endomyocardial Fibrosis Diagnosed?
Diagnosing EMF can be challenging because its symptoms overlap with those of other heart diseases. Some of the ways to diagnose the condition include:
- Echocardiography: This ultrasound test allows doctors to examine the heart's chambers, valves and movement. It can reveal thickening of the inner lining and problems with the heart's ability to fill with blood
- Cardiac MRI: Magnetic resonance imaging provides detailed pictures of the heart and helps identify the location and extent of fibrosis
- Electrocardiogram (ECG): This test records the heart's electrical activity and can detect irregular rhythms or other abnormalities
- Blood tests: These may help identify inflammation, assess heart damage and check for complications, however, no single blood test can confirm EMF
- Cardiac biopsy: In selected cases, doctors may examine a small sample of heart tissue that can help establish the diagnosis.
Can Endomyocardial Fibrosis Be Treated?
There is no established treatment that reverses advanced fibrosis. However, treatment can help manage symptoms, reduce complications and improve quality of life.
Doctors may prescribe diuretics to reduce fluid buildup and other medicines to manage heart failure. Blood-thinning medication may be given when blood clots are present or the risk of clot-related complications warrants it.
In selected patients with advanced disease, doctors may consider surgery to remove fibrous tissue from the heart's inner lining. The procedure can improve heart function in some cases, but its suitability depends on the extent of the damage.
Disclaimer: This content including advice provides generic information only. It is in no way a substitute for a qualified medical opinion. Always consult a specialist or your own doctor for more information. NDTV does not claim responsibility for this information.