Introduction for Parents of Newly Diagnosed Children
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 have walked this road before you, and ASI is here to help.
MESSAGE FROM FAMILY SERVICES AND OUTREACH COORDINATOR, SANDRA HUBBARD LEBLANC
Dear Friends:
Welcome to Alström Syndrome International!
We are very pleased to present you with the information on this webpage and encourage you to join our group by immediately registering through the link provided.
The diagnosis of Alstrom Syndrome is heart wrenching and life-altering to say the least. I know this because, as an Alström Mom, I've been there and walk the same path upon which you now tread! While you have been looking for a name to this “monster” that has taken over, I know that you may now have a sense of relief in knowing what it is you have to deal with despite the thousands of questions that are fearfully and rightfully running through your head.
ASI firmly believes that the more information that can be provided on this illness, the more knowledge and empowerment you will gain and the better your chance of positively dealing with the impacts of the disease. Your interest in finding out more is a step in the right direction. It will help you eventually get back onto a path of normalcy in your life and the emotional roller coaster you are now on will eventually slow down.
On these web pages, you will find information that will be of benefit to you. Some of the information is very difficult to read as it pertains to the vast medical issues and challenges that you or your child(ren) may have to confront. I caution you to always keep in mind that not all affected individuals have all of the symptoms listed and individuals vary greatly in how the symptoms present themselves. You will also find other information on where to find support, how to contact ASI, as well as photos of our great family.
As your Family Services and Outreach Coordinator, please do not hesitate to contact me (902-648-2143, (902) 648-8156 (mobile phone) or e-mail: asisandra@eastlink.ca with any questions or concerns that you may have as well as any assistance you may need in regards to living and dealing with Alström Syndrome. Whether questions for home, daily living, school or medically related - I will do my utmost to assist you.
Please keep in mind that ASI also has a Scientific Advisory Board made up of many scientific, medical, and other experts who may be able to answer some of your questions. You now have a world of experts at your fingertips.
Remember that YOU ARE NOT ALONE with this Syndrome! There is a remarkable group of people, spread out around the globe, who understand what you are presently going through and we truly are your Alström Syndrome International family!
I welcome you to the family and wish you a rainbow despite the rain!
Sandra Hubbard-LeBlanc
Family Services and OUtreach Coordinator
