Nemaline Myopathy: CJI Chandrachud's daughters are victims of this rare congenital disease, 1 in 50,000 suffers from it

The two girls adopted by Chief Justice of India DY Chandrachud are suffering from a rare muscle disorder called 'Nemaline Myopathy'. This is a disease for which a solid cure has not been discovered yet. 

What is Nemaline Myopathy: Chief Justice of India DY Chandrachud talked about the illness of his two daughters. He told that both the girls have a rare congenital disorder called 'Nemaline Myopathy'. This is a medical condition that damages muscle protein, causing muscle weakness, after which the patient has problems in breathing and eating. According to statistics, one in 50,000 people suffer from this disease.

This rare muscle disorder is challenging

Understanding 'Nemaline Myopathy'

Renowned neurosurgeon Dr. Payoz Pandey said that 'nemaline myopathy' is a rare genetic muscle disorder in which there is the presence of thread-like structures inside the muscle fibers, which adversely affects your ability to move and work. Since it is caused by many types of gene mutations, there are 6 types of it depending on the severity of muscle weakness.

Understanding the genetic mutation is important for better diagnosis. Its most severe form is significant muscle weakness and difficulty in breathing in the first year of life. In many cases, the patient may even die. Although if the disorder is mild, it does not pose a threat to life, but life definitely becomes difficult due to muscle weakness, which has a very bad effect on the normal activities of daily life.

What are the difficulties in diagnosis? 

One of the initial challenges in diagnosing nemaline myopathy is its rarity. Therefore, it is considered a muscular disorder. If the disease is detected late, it can prove to be harmful for the patient. A biopsy is required to investigate it, for which doctors have to be very careful.

What is the treatment for 'Nemaline Myopathy'?

As we told you, there is no sure cure for 'Nemaline Myopathy' at present, but scientists are continuing their research on this. However, supportive care like physiotherapy and muscle strengthening prove to be very helpful for the patient. Some medicines do target the genetic mutation, but these are not enough. Physiotherapists help in increasing the strength of hands and feet, while pulmonologists ensure that the patient does not have any difficulty in breathing. Apart from this, emotional support of the family is also very important so that the patient does not feel emotionally weak.

(Disclaimer: Dear reader, thank you for reading this news. This news has been written only to make you aware. We have taken the help of home remedies and general information in writing this. If you read anything related to your health anywhere, then definitely consult a doctor before adopting it.)