Welcome!
This is a website for everyone who wants to know more about Poretti Boltshauser Syndrome. It is full of information and experiences from parents and children.
Getting the diagnosis might bring a lot of confusion, because the syndrome is so rare. Because of this, experiences are valuable and needed to get the whole picture.
Read more about PBS here. Below this text is a button that guides you to the Facebook page of a parent support group for parents of children with PBS. You can share experiences, ask questions or just find support.
My name is Alissa and I am an adult with Poretti Boltshauser syndrome. This website is also a blog for me and I take guest blogs from other parents of children with Poretti Boltshauser Syndrome. You can find my blogs on the right sidebar of this website. They might help people, but always note that every child with PBS is different so experiences I had may not apply to your child.
I have created this website to help others out, using my life experiences. Since the syndrome wasn’t found out about until 2014, I never had the diagnosis growing up. Hearing the diagnosis made everything much clearer for myself, but also people around me.
If you are reading this and are concerned, know that there is a lot you can do to help children with Poretti Boltshauser syndrome to develop into great adults. On this page you can read what Poretti Boltshauser syndrome is and how you can help improve the development of a child with PBS.
