SMA is a serious, progressive nerve and muscle disease. The disease arises because the body does not produce enough or no protein at all. As a result, the nerves fail and eventually die, resulting in progressive, fatal paralysis. In the most serious cases, babies die in their first year of life.
10 to 20 babies with SMA
Every year 10 to 20 babies are born with SMA. SMA has a huge impact on children, their parents and their environment. Fortunately, a treatment is now available and there are most likely two new treatment options on the market before the end of 2021. The sooner the disease is detected and the sooner it can be treated, the greater the chance that unnecessary, permanent damage can be prevented, according to Spierziekten Nederland.
No barriers
With the thoroughly conducted implementation test, a complete action plan is ready and there do not appear to be any obstacles to a quick start. Nevertheless, according to the implementation test, it will take at least another 2 years before the disease is added to the heel prick. “A huge disappointment, because certainly in the case of SMA there is no time to lose.”
Muscle diseases The Netherlands is urging in the interest of the children to add SMA to the heel prick as soon as possible. Director Marcel Timmen: “For our parents it is intolerable that the process has to take so long with the risk that dozens of children will be diagnosed later than necessary. It is urgent to offer these children with SMA the best possible start. ”
By: Nationale Zorggids
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