What are the long term effects of Stevens-Johnson Syndrome?

People who are fortunate enough to survive an episode of SJS tend to experience long term effects in the areas that were most affected in later stages of their lives. We believe that given adequate information about post SJS effects to survivors and their families, they will be able to make an informed decision in preparing for their future.

Some of the symptoms and conditions reported by some survivors include:

• Skin problems such as itching,
• peeling and sensitivity to the sun,
•  reduced perspiration,
• rashes permanent loss of nail beds,
• photophobia,
• scarring of the cornea and visual problems,
• fatigue,
• rheumatoid arthritis,
• scarring or loss of the lining of the mouth and tongue,
• swallowing disorder,
• tooth decay and gum disease,
• scarring of the bladder and post traumatic stress.

Our ongoing research with SJS survivors shows that as part of the post SJS effects they experience, most of them have suffered a visual disability which is greatly impacted by environmental conditions. Some have observed that their visual deterioration had a gradual trend and others noticed a radical change after some form of straining on their eye. The visual state for most of these survivors can be described as a functional blindness in that though they may appear to have some residual vision, it is greatly impacted by environmental conditions such as lighting, sunlight and heat thereby making it unreliable for performing routine tasks. We hope to help alleviate the anxiety experienced as these changes occur and we hope to achieve this by facilitating SJS support groups where survivors can interact with each other.