Don’t panic. Sarcoidosis is a very individualized disease. While there are some similarities in what we experience, each of us walks a very personal path and many people with this disease continue to live very normal, happy lives. Stay positive.
Connect with others who have the disease. Learning that you have a potentially chronic disease can be overwhelming and, learning you have a disease like sarcoidosis that so few have heard of and is unpredictable can be frustrating and scary. Getting to know other people who have already walked on their path for awhile can bring you great comfort. It’s important to know that you are not alone.
Get educated about the disease. Since sarcoidosis remains a mystery to the medical community and since it is pretty rare, there are actually a lot of doctors who don’t know that much about it. Being educated about the disease will help you find one you trust and it will help you be your own best advocate and there will be times you will have to advocate for yourself!
Don’t believe everything you read and hear about sarcoidosis. First, don’t assume all the terrible things you might read or hear about someone else’s experience will happen to you. You will have your own journey with this disease. Many people do go into some kind of remission/inactive phase of the disease. Whatever happens in your case, you will find a way to cope. Secondly, don’t believe anything you read about miracle cures or treatments that sound too good to be true. There is no known cause or cure for sarcoidosis. Sadly, there are some scams out there who will gladly make a buck off your pain and fear. If it sounds too good to be true, it is too good to be true!
This is a marathon and not a sprit. It can take awhile to get a proper diagnoses because sarcoidosis mimics many other diseases. The only true way to know for sure if you have it is through a biopsy. Once you are diagnosed, even if it is not impacting your heart or eyes, get both checked and then have regular annual eye exams with an ophthalmologist familiar with the disease.