What can you expect over the longer term?

In the topic about the symptoms you’ve read what symptoms can occur with MSS. This topic deals with the different life phases in which these symptoms can start, worsen or get better.

Baby phase

Almost all babies with MSS have trouble breathing directly after birth. Because of their constricted airways and reduced muscle strength, they also have difficulty swallowing. This is why feeding is often very troublesome. Another frequent problem is bright (day)light: their eyes can’t handle it very well.
During the first months after birth, the babies are very susceptible to respiratory infections, making hospitalization sometimes necessary. It might even be life threatening during the first months. Thankfully, death as a result of the infection is less common these days. More and more knowledge about this syndrome is being gathered and treatment of the symptoms is getting increasingly better.

Child phase

The physical symptoms caused by MSS often worsen between the ages of 8 and 10. Reduced muscle strength will become a bigger issue as children become more active. The spine becomes more curved as children suddenly grow very fast (growth spurt). Lastly osteoporosis can start at this age.
There are also symptoms that improve during this phase. Problems with breathing usually get better with age. Sometimes this is only temporary, the symptoms might get worse again later in life.

Young adult phase

Growth and development of the body are normal for a person with MSS. Puberty will start and from that moment onward the bones mature faster than the rest of the body. Their bones will become brittle and can fracture more easily. The curve of the spine will also continue to worsen, which can start to increasingly hinder movement. More or other aids will become necessary to support standing and moving. Little is known about sexual development of children with MSS. You can always ask the advice of a doctor specialized in intellectual disabilities.

Adult

From the young adult phase until the age of 35, there don’t seem to be any new health problems. There is no knowledge about the quality of life after the age of 35 yet. Neither is anything known about life expectancy. More study into MSS is being done at the moment.