If you or your loved one has suffered with Stevens - Johnson Syndrome you probably have Post Traumatic
Stress as well. Every year you will remember the anniversary date of diagnosis. Watching a television program can bring back a flood of memories or before pictures can throw you into hours of sobbing and what ifs?
After my daughter had SJS I saw a doctor, hoping he could help me with feelings of anger and sadness.
My little girls life was now changed forever. How do you prepare your child for a lifetime of doctors appointments and ongoing traumatic procedures? I hoped this man would have the answers, but he didn't.
He had never heard of SJS. I left his office even more depressed.
I just knew she wasn't the only one out there. There had to be more SJS family's. After all, there were
2 boys in the hospital with Stevens - Johnson Syndrome while she was there, but hospital staff were not
permitted to share our information with each other. I needed to find another parent and I knew the day would come that Julie would need to find a fellow survivor. One afternoon at a pediatricians appointment I wept begging him to help me. A nurse in the burn unit had told me that Julie's doctor had another case the year before. A 6 year old girl. I gave him permission to give her parents my phone number. The next day I received a call from her mother Janet. Little did I know Janet was looking for us too. Julie's story had been on a local news station a few weeks before and Janet had seen the story. She called the station and asked for our number. They like the medical community were unable to help her. She worked in customer service at a local store and we arranged to meet. When Julie and I entered the store Janet immediately recognized us. She raced around the counter and we hugged each other and cried. It was as if we had known each other for years. It was the beginning of a healing for me. I still have nightmares and bad memories but I know we are not alone in this.
That meeting was the beginning of the SJS Support Group. I'm not saying don't seek out a therapist
but consider finding a support group . Our online support group has been a wonderful resource. We have parents, survivors and we have a bereavement support group as well. If you haven't spoken with other survivors or parents, I urge you to do so. They can offer advise, names of medical facilities and knowledgeable doctor's information, We have numerous support group facilitators across the country and
around the world. Don't try to go it alone. Someone is only a phone call away.
Stevens Johnson Syndrome Support Group
You can also find us on facebook: Stevens Johnson Syndrome Foundation Facebook
and also join our cause for SJS Awareness: SJS Awareness Cause