Because the disorder can have progressive disfigurement, parents and affected persons are apprehensive and may benefit from support. Our goal is to study in detail the stresses, challenges and needs of affected persons and families and develop appropriate ways to respond to those needs. Understanding the cause of Proteus syndrome is important for several reasons. First, if a molecular cause can be found, it may be possible to develop a simple blood test for the disorder. Second, knowing the cause can help to understand how complications arise.
Effective treatment is one of the final goals of the research and there is reason to hope for cure.
Such a goal may be a long way off, and may not come in our lifetimes, but is worth pursuing with vigor. All of these advances can only be achieved with the active participation of individuals and families affected by this disorder. But research is not for everyone. We encourage families to carefully consider the benefits and risks of participation and make an informed decision. The path to understanding and treatment of Proteus syndrome may be long and difficult.