What problems can you face as a relative or carer of a person with the Marshall-Smith Syndrome?

Risk of overburdening

Many parents or near ones of a child with MSS, feel they need to be strong and shouldn’t complain, let alone give up. But the amount of care you have to give and the responsibility you carry, are enormous. Because others often don’t have the knowledge and experience, it is hard to trust someone else with the care of your child. This might take so much time and effort, you could develop health problems yourself. Exhaustion, irritability and depression are common symptoms. It is important to get help as soon as you notice you are starting to get these symptoms. When you are not fit and healthy yourself, you cannot care for someone else. It could be an option to build a network of family and friends who can fill in every now and again. Simply by being a sympathetic ear or doing odd jobs. There are also professional care providers who can do this for you. From a social worker and domestic help to trained council workers and a psychologist. If you find it hard to figure out who can best help you in your situation, ask your general physician. He or she will know where to find the right kind of help.

Effect on siblings

Siblings will often feel the effect the disease has on the entire family. No matter how well you try to split your attention between your children, a child with MSS will always need more care than healthy brothers or sisters. It often happens that brothers or sisters will efface themselves by requiring less attention from their parents. But the reverse is possible as well. Some children will demand extra attention from their parents by exhibiting problem behaviour. This can also be an (unconscious) way of dealing with emotions.