Many times physicians don’t readily identify Stevens Johnson Syndrome and such; misdiagnose what could very well be one of the more important calls in their career and in your life. For survivors, this is often compounded by the fact that family medical practitioners and internal medicine physicians have not had formal training in treating what can be extensive damage to internal organs associated with SJS in which symptoms tend to appear some years later. Sometimes it may feel as if you simply can’t make your physician completely understand what’s really happening to you. Here are some tips to help you live a more normal life after SJS and help your physician understand your concerns.

Communication with your physician is the key. While for the first year or two after surviving Stevens Johnson Syndrome, you may be tempted to attribute every little ailment you have to the condition, you must place things into perspective. Did you suffer from seasonal allergies before you got sick? If you did, you’ll still suffer from them now. Did you have arthritis? Take the time to make a list of health concerns you suffered before you were afflicted with Stevens Johnson Syndrome, and then compare that list to health anomalies you now face.  Now you can approach your physician with hard, cold facts – not just complaints.

When communicating with your physician, be open and honest – and expect your doctor to make time to do the research and actually learn about Stevens Johnson Syndrome. Point out the last word in the name of the condition, “syndrome”. This condition can affect several body systems all at the same time, so taking the time to learn about this disease, and then asking your physician to research it, is paramount in keeping you healthy.

Don’t be afraid to change to a new physician if you feel you must. You can navigate the nightmare maze of health insurance advocacy if needed until you find a doctor who will listen to what you have to say and act on it. Many times as survivors of SJS and TEN, we tend to know more about what’s happened to our bodies than the doctors do – simply because we took the time to learn about this condition. That’s what you should expect from your physician as well, so don’t be afraid to ask for what you want!