When you are first experiencing a diagnosis:
Please don’t panic. When we first hear the diagnosis we automatically think the worst…
It is very difficult to enter into unknown territory. You will experience all kinds of emotions and you may feel very alone. With a rare condition it is difficult to find others who truly understand what you are feeling. Educate family and friends and allow them to participate in the process of understanding with you.
Your first steps:
You want to make sure you are acquiring correct information. After getting the specifics from your doctor or specialist, a good resource is the Moebius Syndrome Foundation.
View an online version of the Moebius Syndrome Foundation Welcome Booklet. This is a great option for those that live outside of the U.S.A.
Please feel free to email us or give us a call.
Connecting with others who have lived with Moebius is the most accurate, specific and up-to-date source of knowledge and support. Join one of the Facebook groups set up specifically to provide conversation and support. Find our groups here.
Remember, you are not alone!
When you visit a doctor:
Do as much research as you can before your doctor’s visits. Arm yourself with information about Moebius to educate the doctor. Write down specific questions as you think of them, don’t rely on memory because this is a stressful time.
As you travel down this road:
This is a stressful time in your life but always remember that it will get easier as you gain information and support. You will become your own biggest advocate.