Five years ago, when I was twelve years old, I was diagnosed with a rare disease called Toxic Epidermal Necrolysis Syndrome (TENS). TENS is a rare allergic reaction to medication that causes your body to burn itself from the inside out. In a matter of days, I was covered in blisters from the top of my head to the tip of my toes, this included my eyes, and anything with a mucosal surface. I was put into a drug induced coma and a ventilator for about a week. I went through an unimaginable amount of pain.
Afterward, I was left with severe damage to my eye that causes constant pain. The damage still causes multiple infections and ulcers, I have had multiple surgeries to try and fix the damage that was done. I was blind for a year until doctors gave me sclera lenses which are contact lenses that hold moisture against my cornea, smoothing out the surface to clear my vision and thereby alleviating enough pain to allow me to open my eyes. It damaged my lung tissue making breathing difficult, it affected the tissue in my mouth, making it impossible for me to maintain the PH causing my teeth to erode which resulting in pain every time I eat.
This disease has affected multiple other things in my life as well. The greatest damage was to my mental state. My life as I knew it was over, and at the time I was told that the amount of pain I was in might never go away. So there I was a twelve year old girl with no hair, weighing 68 pounds, with scars and disfigurements, facing the harsh reality of my new world. It broke me. All of my hope was drained from me. I reached a point where I just quit fighting until I realized I had a choice, I could choose to hate my life and everything that had happened to me and what my future held, or I could use my experiences to help others and make my future a bright and hopeful one. I chose the latter. I got involved with the Phoenix organization which is involved with the burn community, I went to be trained SOAR (survivors offering assistance in recovery) as a peer mentor to help those going through similar circumstances as my own. Basically what I do is go to burn units and talk to young girls or boys who are suffering from TENS. I encourage them that they will get better and that their life isn’t over.
I can’t give multiple details due to confidentiality, but I would like to share with you the first person I was able to help through this process. This year I was called by the organization and told about a 12 year old teenager who was suffering with the same thing I had, they asked me to come in and talk to her and her family because they were have a difficult time coping with their new reality. I went in and saw myself lying on a hospital bed. I talked with them for hours telling them about what happened to me and my life, I answered their questions and held their hand as they cried, I told them about the choice they would have to make. They chose to use their experience for good, by the end of the visit they seemed to have hope. I feel this is the greatest thing I have done. It is hard to believe I was capable of doing something like this. I truly believe that I was able to help them realize that even though at that moment in time it seemed as though there life was over, that there was an even better future ahead of them that they never could have imagined. That is something everyone needs, something I desperately needed when I went through my ordeal. I had never felt so joyful, and proud in my life. I love doing this, because I never had that during my hospitalization and recovery. I genuinely thought I would never live a normal life and I would never accomplish anything. That thought was the most painful of all. I have decided to live my life for others and continue volunteering to help people who are going through the worst of times. My greatest passion is using an ugly experience to make a beautiful future for myself and, most importantly, others.
Hannah Manche is a 17 year old girl. She is pursuing a career in the nursing field. She is involved with multiple organizations focused on provided help for those with medical complications. Hannah is a Toxic Epidermal Necrolysis (TENS) survivor. She has a huge heart devoted to helping those in need. Hannah has and will continue her attempts on changing the world.
