- Live life to the fullest because life is fragile
- Share your story to help heal someone else’s heart
- Even when life isn’t easy, you can find something beautiful
- Condition: TENS (Severest form of Steven Johnson Syndrome)
When you feel sick and go to the doctor as a 12-yr. old, you are supposed to get better. But for Hannah, a rare drug reaction launched a series of agonizing bouts of intense pain and physical scarring that have taken years to overcome. It was just before Thanksgiving 2014 when Hannah went to the doctor with complaints of joint pain, nausea, and a slight fever.
Lyme disease was suspected, and she was given Doxycycline. What seemed a simple antibiotic treatment generated a rare drug reaction called Stevens Johnson Syndrome/TENS. She suffered indescribable pain and it was as if her body was literally on fire and burned from the inside out. She was transported to Children’s Hospital in St. Paul and the Regions Burn Center where she was placed in a coma and on a ventilator with burns over 100% of her body.
Stevens Johnson Syndrome/TENS results in extensive blisters that can cover the eyes, ears, throat, mouth, lungs, airways and other areas. It was months before Hannah could eat, drink or see due to the blistering in her mouth, airways and eyes.
Hannah has endured more pain than anybody should in a lifetime, much less in her young life. To her family she is a hero who gets up every day, facing her trials and pain with determination. She is unwavering in her faith, and wants to use these trials in her life, suffered through this horrible disease, to help others.
Recently, Hannah, along with Inspirational Face Maddie, took advantage of a photo shoot through the Courageous Faces Foundation to advance their aspiring modeling, acting, and speaking careers. The progression from initial self-doubt and a bit of nervousness to a portfolio of “glam” shots was transformational, and one of the best confidence-builders they’d both experienced.
What Hannah would like you to know about TENS (Toxic Epidermal Necrolysis Syndrome) and SJS (Steven Johnson Syndrome):
- TENS is caused by an allergic reaction to medication causing a severe reaction as the body attacks itself on the inside and blisters to the outside including the eyes, ears, throat, mouth, lungs, airways and other areas.
- TENS and SJS are the same disease with TENS being more rare, severe and covers over 40% of the body. Hannah’s TENS covered 100% of her body from the inside out.
- Take time to educate yourself before you medicate, ask why a doctor is prescribing a medication and the potential side effects.
Things Hannah has learned on her journey through TENS:
- Life is fragile so live it to the fullest because it can end at any minute
- Have fun in life but know life isn’t just about you. We are each here to help others by showing them a brighter path to help lead them out of their darkness. Become the brightest light you can be.
- If you know someone living with a chronic illness, they have a story and it has shaped who they are, but it is not who they are. They are more than their illness.
- Being blind for so long taught me the beauty of how God is in EVERYTHING. Through this marathon of a journey I have found blessing, strength and comfort from others through kind words, deeds, prayer, gifts, friendships, and mostly my Lord and savior Jesus.
Why I am thankful for the Courageous Faces Foundation:
“I am incredibly thankful that I get to be a part of the Inspirational Faces of Influence through the Courageous Faces Foundation. They have given me strength and courage to keep fighting my battles, to love myself despite my scars and limitations.
They have shown me there is more to myself then my illness, that I am not defined by my disease and that I have power and beauty. They have changed the way I look at myself and look at others around me.
Before I became a part of the foundation I was completely alone in my journey. I had no one in my life capable of understanding what I had gone through and still go through on a day- to-day basis. That feeling of loneliness made me feel like a social outcast, someone incapable of ever being able to make true connections with other people, even the ones whom I loved.
Through the Courageous Faces, I have finally met other people who share similar experiences and who felt the same physical and mental pain I go through. I finally have people I can connect with, and everyone has become my family. The greatest thing that Courageous Faces has given me is breaking me free from the chains of my isolation, releasing a huge burden from life that had affected every aspect of myself and others around me. Courageous Faces showed me people who allowed me to begin the healing process of self-love and acceptance.
My health is unpredictable, nobody really knows where I’ll be health-wise in the future. We know that I will always have health problems, pain, surgery’s, and new complications as I get older. My health will forever and always be a part of who I am, but never the entirety of who I am. Knowing I’m not alone in this never-ending journey fills me with indescribable peace, security, and love.
Hannah’s Story From a Mother’s Perspective
Kathy (Hannah’s Mom) shares a parent’s journey through TENS The hardest thing I have ever done is watch my child, Hannah, on the brink of death while in severe pain that medicine could not touch. My prayers as I sat by her side were never ending, including asking God: To spare her life as life threatening infections set in; To spare her eyesight as her eyes blistered and she screamed in pain; To give us the strength to run the marathon of surviving TENS, which at times seemed like a never ending race.
One of the struggles I have had since the recovery of the acute phase of TENS is dealing with the many complications. It has been difficult finding doctors who know anything about SJS/TENS and its complications. There have been multiple doctor visits and tests that have led to the frustration of no answers because Hannah’s symptoms don’t fall into a predictable diagnosis. There are things she will deal with daily the rest of her life, including: that her eyes cause her pain every minute of every day.
Hannah has endured more pain than anybody should in a lifetime, much less in four of her short 16 years. I am so proud of how she has faced & overcome these many physical, emotional, and spiritual struggles. She is a hero to me in getting up every day, facing her trials and pain with determination, and in her wanting to use these trials in her life, due this horrible disease, to help others.
Important things I would like you to know about TENS:
- Take time to educate yourself on SJS/TENS – Educate before you medicate. Be an advocate for yourself. Question the doctor on why he/she is prescribing it and the side effects. The main cause of death with TENS is infection because of blistering and infection kills 25-30% of TENS patients.
- Complications and chronic conditions that can come from TENS include: asthma, chronic cough, chronic fatigue, chronic pain, cold sensitivity, cornea ulcerations and abrasions, depression, dry eye syndrome, fluctuating vision, hearing loss, heat sensitivity, joint pain, clogged tear ducts, and inability to produce moisture in her eyes, mouth pain, sensitivity to certain foods, excessive tooth decay due to dry mouth, loss of nail beds, sensitivity to light, post- traumatic stress, stenosis, and difficulty swallowing some foods.
- Do not be afraid to approach somebody with chronic illness. Yes, they have a story and it has shaped who they are, but it is not who they are. They dream and struggle, laugh and cry, and have hobbies and interests just like everybody else. They are more than their illness.
- Through this marathon of a journey I have found blessing, strength and comfort from others through kind words, deeds, prayer, gifts, friendships, and mostly my Lord and savior Jesus.