Next Steps in your Alström Syndrome Journey
What this Diagnosis Means & What to Expect Next
An Alström Syndrome diagnosis means you are now a part of a new family; our Alström Family.
A rare disease diagnosis can look different for every individual with Alström Syndrome. Symptoms, progression, and impact can vary widely. This diagnosis does not define you or your loved one; it is one part of a much bigger story!
You may be referred to additional specialists or providers. Further testing or evaluations may be recommended by your physicians. Genetic Counseling will be recommended for you or your family member.
First Steps &Support
Gathering and organizing medical records and test results are a great way to start your journey. After meeting with your genetic counselor remember to write down any questions you may have for your providers for future appointments. Feel free to reach out to the ASI team for any ideas or questions too!
Starting this journey brings many emotions! It is completely normal to feel grief, fear, anger or uncertainty after you or a loved one is diagnosed. Consider speaking with a counselor familiar with rare disease diagnoses.
Connecting with our Alström Family and others who understand can be incredibly helpful.
School or workplace accommodations are also very helpful. For disability and accommodations in your location please visit your local/state page. For USA based: https://www.ada.gov.
Medical Care, Specialists, and Treatments
Alström Syndrome requires a multidisciplinary care team. Coordinated care and good communication between providers is very important. Preparing yourself before appointments can help you advocate effectively. For advocacy tips reach out to our Family Support team!
Currently we do not have FDA approved treatments for Alström Syndrome but that is what we are working on every day! For a list of helpful hints and others’ experiences in AS download our Handbook here.
You are not alone.
Organizations like our exist to help guide, connect, and advocate. Reach out when you are ready. There is no timeline. Take this journey one step at a time.