Introduction for Parents of Newly Diagnosed Children
It is very important to never lose sight of the amazing strengths and abilities all of the people with Alström Syndrome possess. They inspire us all every day!
Please take a moment to read this welcome letter from Robin Marshall, Executive Director of Alström Syndrome International.
Perhaps you have found this website because a loved one was recently diagnosed as having Alström Syndrome or perhaps you are a professional working with a person who has a new diagnosis. We hope these pages will be a starting point for you to gain support, along with a better understanding of this complex genetic condition.
Here is a general description of some of the features of Alström Syndrome. It is important to remember that not all individuals with Alström experience all of these symptoms. Alström Syndrome is extremely variable! For additional information see clinical features.
Keeping Things in Perspective
If you are the parent of a young child with Alström Syndrome, the diagnosis can seem overwhelming, filling you with uncertainty and dread for the future. You are embarking on a difficult journey, but one that is also rewarding. You will grieve when your child struggles, but you will revel in his or her accomplishments. You will encounter many difficult times, but also times that are joyful, humorous, and never boring. You may feel intensely isolated – most likely, none of your friends or family members has ever had to face the challenge of Alström Syndrome.
But remember that you are not alone. Many families will walk this road with you, and ASI is here to help.