There is no cure for the syndrome, but symptoms can be relieved by treatment. To achieve optimal results, it is important that different doctors and specialists work together.


Newborns need to be carefully monitored and may require incubator care. Hospital care may also be needed in through adult life. At young age, it is important to control the salt and fluid balance in the body. Due to their skin, children can suffer from dehydration quickly. Diarrhea and vomiting are also a risk for fluid balance, even later in life. The skin should be moisturized several times a day, with a fat ointment. It is important to pay close attention to infections, including minor infections. Untreated infections can lead to life-threatening situations. Sometimes there is pain medication needed.


Nutrition can be a major problem, especially in the first year of life, and these problems may continue later in life. Because of food allergies it may be necessary to consult with dietitian. To avoid allergic reactions, it is important that everyone who has to take care of the child (at home or at school or in other situations), are working together as a team to make the risk of these problems as small as possible. Any caretaker of the child should be aware of allergies and how to deal with it.


Skin care routines are important. Effective routines are highly personal, what works for one person does not need to work for somebody else.  Caring for the skin and hair will take a long time every day, but it is very important.