Here are the stories of Burn Concern’s volunteer directors. We are all here to help you reach a happy ending for your story as a burn/Steven-Johnson syndrome survivor or loved one. If you would appreciate support, feel free to contact any of us and we’ll be there for you.
Saturday, April 1, 1978, was a beautiful spring day. I was 9 years old and was spending the day playing outside with my friend Kenny. That beautiful day turned into a tragic one that forever changed my life. We found an old dog house, a great spot for hide and seek with Kenny and I inside. But being young boys, we were playing with matches and when I flicked a match at Kenny while inside the dog house, a small fire immediately roared out of control around us forcing us to crawl through the flames to escape.
We were rushed to a local hospital by our fathers, but due to the severity of our burns, we quickly were transferred to West Penn Hospital’s burn unit where we stayed for more than seven weeks. Burns covered 60 percent of my body, of which over 30 percent were full depth, or 3rd degree. My parents were told to “hope for the best but be prepared for the worst.” Recovery would not take days or months, but years.
From constant bandage changes and skin grafts, to fighting infections because of so many open wounds, through over 18 months of wearing full-body Jobst garments - all while enduring constant pain and agony - I somehow survived. I survived due to the incredible care I was given throughout this ordeal, most of which was at West Penn Hospital, along with the love and constant support of my parents and entire family. Brothers, aunts, uncles, cousins and grandparents provided more than I could ever repay.
Over the years and through more surgeries than I can count, I wondered, “Why me?” and “What is it all for?” Regardless of the anger, guilt and loneliness that I have felt because of that one horrible day in my life, I now know that I did not make it through this alone. A few years ago, I lost the one person who supported me constantly - my mom. Six months later, I was diagnosed with diverticulitis and told I needed a bowel resection. Once again, I was put into a position where over the next three years, while enduring 10 surgeries, I wondered how I would go on.
After being encouraged to attend the 2012 World Burn Congress in Milwaukee, Minn., I walked into a room of more than 800 people who had been burned. It was the first time that I can remember where I felt like no one was staring at me. I felt not only accepted by the attendees at the conference, but also understood. I was not alone. Back home at a meeting set up by the West Penn Burn Center I met Ray and Beth Ann Smith. Like me, Ray had been burned and shared with me the positive experience they had with the Burn Concern of Legacy Emmanuel Hospital in Portland, Ore.
I recalled a conversation I had years earlier with my best friend about somehow helping burn survivors. This became the inspiration for my commitment to helping start Burn Concern at West Penn Hospital. I want to ensure that no one has to go through any burn experience without the support and love from people who care . . . people who understand. As I know firsthand, this is one of the most essential aspects of recovering from the tragedy of being severely burned. I look forward to serving in any and every capacity to make sure that Burn Concern at West Penn Hospital is a success.
My story begins on Monday, February 26, 1996. It was just another day at my work in a print shop. I was on my lunch break reading the paper. An article caught my eye about an 18-year-old, Brian, who worked at a tree farm in Oregon and was in a horrific explosion accident. He was burned over 90 percent of his body resulting in the loss of his arms, legs and eyesight. The story really touched my heart. Little did I know that in 20 minutes I would be on fire.
But, that’s just what happened. My printing machine jammed up and started a fire. My coworker lifted the lid to the machine, allowing oxygen to flow and causing an explosion. This explosion blew all the chemicals on us and we were standing there on fire.
I was treated in the Legacy Emanuel Portland Burn Unit in Portland, Ore., where I met Brian. He was part of the reason I strived and fought to recover.
I spent the next two weeks in an induced coma, with nurses continually probing my arm looking for a pulse. Little did I know my deadline was reached and I had 12 minutes to regain a pulse or they were going amputate my arm. Through the amazing efforts of the burn nurses and my burn surgeon, Dr. Pulito, they saved my arm. I spent four months in the ICU and was visited daily by my fiancé. This support meant the world to me since we just moved across the country together and she was all I had. (We have now been happily married for 16 years). After four months and several surgeries, I was finally released from the hospital. Now the hard part began.
I had a home nurse visit twice a day and spent one year in physical therapy relearning everyday tasks we take for granted. I began learning to walk, use my fingers, and bend my arms. I came to the realization I would never be the same physically again and it would be an even longer recovery mentally. And I am still working on it. I wasn’t able to look at my body for an entire year, even closing my eyes when in the shower. It took a year, but one day I decided this is me, so let’s take a look. This was my big first step on my road to recovery.
The road to recovery was long and left me feeling very alone at times. Summer was always difficult as I was not comfortable wearing short-sleeved shirts, afraid that people would stare. That took some getting used to, but I finally realized “this is who I am”, so out came the short sleeves. To this day, 15 years later, I’m still making progress. This would not have been possible without the continued and loving support of my wife, my son, my extended family and friends.
This has happened to me for a reason. I truly feel my mission is to help other burn survivors. I want to show others that there is life after a burn. It does take a while (both physically and mentally) for your life to improve. I am now here to help you through all the hard, difficult times so you may too overcome your burns. And remember, you are a survivor!
Stevens-Johnson Syndrome Survivor
My name is Orissa. I am a Steven-Johnson syndrome (STS) / toxic epidermal necrolysis (TEN) survivor, in recovery for eight months. SJS/TEN has affected approximately 85 percent of my body, and yes, here I am, still fighting each day to live a better life. It’s amazing what we as humans go through physically and mentally that challenge and push us far beyond our limits.
My goal is to raise awareness, inform and in particular, support those who are experiencing or recovering from SJS/TEN. SJS is not often recognized immediately upon presentation of symptoms. There are many survivors and loved ones who haven’t had anyone to lean on for support and/or understanding of the illness. So, to alleviate some of the concerns and confusion, allow me to be your guide through this journey to recovery.
SJS and TEN are two forms of the same life-threatening skin disease marked by rash, skin peeling and sores on the mucous membranes and caused by a bacterial infection or by an allergic reaction to drugs or medication. There are overlapping symptoms that can occur for both of these conditions over time. As the condition worsens, so do the symptoms.
For two years, I had been suffering from seizures. A new medication called lamotrigine (brand name Lamictal) was prescribed by my doctor to treat my seizure disorder. After 30 days on the medication, I started having an allergic reaction, presenting as SJS symptoms, and by the time I realized something was terribly wrong, it was too late. My eyes were bloodshot and filled with mucus. I entered the hospital in an extreme amount of pain and ended up on a ventilator for a month. I was heavily medicated to help alleviate the terrible pain and had a tracheotomy, a PEG (percutaneous endoscopic gastrostomy) tube, a central line and a blood transfusion. My vision was impaired. I was bandaged from head to toe to help my skin heal and rejuvenate.
Once I had recovered from being on life support, I was sent to occupational and physical therapy and skin care. Reality hit, as I began to register what had actually just happened to me. After this realization, my goal for myself was to become healthier and fight for a better life.
If you know of someone who is experiencing this condition, or even a loved one who has concerns or questions…please do not be afraid to contact me.
Family Member of a Burn Survivor
I am not burned. My story is one of support, the most important thing I’ve done for someone I love.
You tend to get caught up in your everyday life - traffic on your morning commute, house cleaning on the weekend, and don’t forget to pick up milk on your way home from work. Then an explosion on a normal, everyday Monday afternoon rocks your world. My fiancé was burned over 43 percent of his body with third-degree burns on February 26, 1996, in an explosion at work, a print shop in Portland, Ore. This could happen to anyone. Everyone else’s life just keeps moving forward but your world stops. You cannot imagine life outside of the intensive care burn unit.
As a family member, spouse or friend of a burn survivor, your role is key in their recovery. My fiancé, now husband, Ray, went through many surgeries, skin grafts and years of physical therapy. Through all of this, it was sometimes difficult to meet the needs of my loved one; other responsibilities and caring for yourself can become a continuing struggle. It was a long hard path to the place we are now … happily married for 15 years with an amazing 6-year-old son. But our road has not ended.
I am now dedicating my time and energy to volunteering with the Burn Concern group, so I may reach out to others who are in a supporting role on a burn survivor’s recovery path. My goal is to connect with the loved ones of burn survivors and help them cope with emotional struggles, share stories and give the hope that you will recover.
My burn survivor journey began when I was 7 years old and just starting the 2nd grade. It was a crisp fall evening and my brother, mother, and her boyfriend, Jim, were going to fix a car at a desolate, abandoned swimming pool park. While he was working on the car, my brother and I slept in the back seat of the car we drove in. I awoke, alone in the car, and got out to go find my brother, who was now buckled up in the backseat of the car being worked on. As Jim poured gasoline into the carburetor, it sparked, so he threw a flaming cup behind him. It landed on my left shoulder, and I panicked and ran. No one ever saw me get out of the car we came in, so it took a while for someone to realize I was on fire. My mother and Jim got my brother out of the car, which was now on fire and dangerously close to blowing up. My brother pointed out that I was on fire, and Jim covered me in a blanket and put the fire out.
My panicked family went door to door to find someone to call 911. Finally, a kind old lady opened the door and graciously gathered every towel in her house, wetting them to cool my burns. As I heard the helicopter and was told I would be lifeflighted to the hospital, I vividly remember begging my mother to take me home so I could go to school the next day. I had a love of learning, but most of all I would be missing art class, which was my passion. Despite my wishes, I was flown to West Penn Hospital to be treated for second and third degree burns on my back, upper legs, left arm, hand, and torso. I was induced into a coma to heal better, and I later received skin grafting on the deepest burns. I was discharged after about a month to begin my long recovery from burn victim to survivor.
Looking back, when I was burned in the 90s at the age of 7, I received minimal support to help me feel accepted among my peers. I felt like I was alone in this “burned bubble,” trying to fit in. I found comfort and pleasure in the artistic world of painting, drawing, sculpting and everything in between. When others noticed my talents, it boosted my self esteem. Soon, those poignant recollections of me wanting to go to art class instead of the hospital the day of was burned became the crystallizing moment in my life that led me to aspire to go to college to become an art teacher. I felt this would allow me to help other students work through their feelings by providing a creative outlet.
College was a fresh start for me and for the first time in my life, I wore my scars proudly and was thankful for the opportunities they offered me. Today as an art educator, I use my experiences as a burn survivor to teach my students to be more accepting of their peers and of the horrible ways bullying can affect children. When dealing with questions about my scars or curious stares, I instinctively use these teachable moments to foster fire prevention, burn advocacy, and anti-bullying sentiments.
Upon attending my first Phoenix Society World Burn Congress, I realized that a lot of burn survivors and their families still lacked support in their communities. I am on a mission to change this and am eager to meet these people and help them understand how to become a proud burn survivor. I hope to plant seeds of confidence in other burn survivors so they want to become part of this Burn Concern support group and help others. I want the Pittsburgh area to become a model city of great burn support and advocacy, where no one lives in a “burned bubble” all alone.