Recently, it has been reported that three-year-old Dhanraj from Mahishgarh, Gujarat is also suffering from Spinal Muscular Atrophy. Many people do not know what this rare disease is, why or why it nests in the body!
Drugs for this rare disease were recently cleared in the United Kingdom for Rs 16 crore. If you look at India, you can see that an injection costs Rs 22 crore. Earlier, an attempt was made to raise money for Mumbai’s Tira Kamat in an attempt to cover the cost of the treatment. It has recently come to light that three-year-old Dhanraj from Mahishgarh, Gujarat is also suffering from Spinal Muscular Atrophy. Many people do not know what this rare disease is, why or why it nests in the body!
What is this spinal muscular atrophy?
In this genetic disease, the muscles of children become weak and stiff and it is difficult to move even a little. The body’s brain, veins and spinal cord cells continue to decay. The brain slowly stops sending work signals to the muscles. As the days go by, the problem increases and the book does not decrease.
Symptoms of spinal muscular atrophy:
1. Hands and feet become weak. Getting up and sitting, having trouble walking 3. Difficulty in performing muscles 4. Stiffening of the joints of the body, there and in the bones, especially pain in the spine 5. Problems swallowing food 6. Having difficulty breathing
Classification of spinal muscular atrophy:
Type 1 – This type of spinal muscular atrophy usually occurs in children 6 months of age, starting with a number of complex symptoms. This type of spinal muscular atrophy is seen in children above 18 years of age, but the symptoms are not so complicated. Type 4 – This type of spinal muscular atrophy is seen in adults, the symptoms are mild.
Type 1 infants usually die within a year, while type 2 is fatal. However, in the case of type 3, 4, there is no risk of death.
Why is spinal muscular atrophy?
Children inherit the disease from their parents. So before family planning, it is important to look at these aspects:
1. If he had a child before, did he have symptoms of spinal muscular atrophy? Whether there is a person with spinal muscular atrophy in either family on either side of the parents!
If the answer is yes, then the child may be at risk of spinal muscular atrophy.
Two tests during pregnancy can help determine if a baby is developing spinal muscular atrophy.
1. Chorionic Villus Sampling – This test is done between 11-14 weeks of gestation.2. Amniocentesis – This test is done between 15-20 weeks of pregnancy.
According to the data, the reports of these two tests in many cases confirm the situation of abortion.
Even after the baby is born, a few tests can be done to find out if he has spinal muscular atrophy.
1. Geometric blood tests can be used to find out if a baby has spinal muscular atrophy. Electromyography Test – This is done by inserting a very fine needle into the muscle to test its effectiveness. Muscle Biopsy – In this case, muscle samples are collected and examined.
Treatment of spinal muscular atrophy
Even a few years ago there was no cure for this rare genetic disease. Fortunately, there are several drugs available in Halifax. Among them, Spinraza came in the market in 2016. The United States Food and Drug Administration licenses the sale of these drugs. Which reduces the symptoms and gradually heals them completely.
Recently, Novartis Gene Therapies has been launched to treat Zolgensma. The cost of one dose of the drug has been reported to be Tk 16 crore. The National Health Service of England has given clearance to sell it in the market.