I, Kirsten Bronsveld-Rustenburg (1977) am married to Arjan. Together we have three children (David, Lars and Meike). We live in beautiful Dalarna in Sweden but both me and my husband are from The Netherlands. After high school, I studied English at the teachers training college in Rotterdam. I really enjoyed working at a school for special education and completed my Special Educational Degree. In Sweden I worked as an English teacher and later as a Special Educational teacher and assistant principal at a secondary school in Ludvika Kommun.
In 2012 I developed TEN (Toxic Epidermal Necrolysis) as a result of being prescribed the drug ‘Tegretol’ (Carbamazepine). In just a few days I lost 65% of my skin. Because of the lack of knowledge about this allergic reaction I was forced to beg for medical care after having developed this indescribable painful rash all over my body. When I finally was taken to the Intensive Care I got into a shock. My body was giving up. I was transferred to the burn unit at the Academic Hospital of Uppsala, Sweden. They could not intubate me because my lungs were affected as well. After two weeks and almost daily treatments with pigskin transplantations, my own skin returned. I was taken back to the first hospital with the message: “Your skin has returned so you are healed.”
Nothing was further from the truth than that message. I was anything but healed. I am still not healed physically because of eye problems and treatments, skin problems, chronic fatigue etc. And I will never be healed – either physically or emotionally. I will never go back to the person I was before TEN. It took me 10 years to gradually accept that and put it into words. Therefore the name of my website is ‘Ten years of TEN’ (tenyearsoften.com). I have written a book about this traumatic experience, in Dutch, my mother tongue. It was released in November 2023 and the reactions have been overwhelming. Not only the book sells well but I have even been contacted by different burn units and dermatologists. I have participated in an international study about the care after TEN, I’ve been interviewed by a dermatologist and that interview will be published in a magazine that will lie in every doctor’s waiting room (in the Netherlands). Even the Dutch community of dermatologists will get this interview and therefore every dermatologist will have the chance to learn from my story. I’m so thankful for that.
In the summer of 2024 the book will be released in Sweden as well, in Swedish. I’m currently even saving up to get the book translated into English as well. It feels like a mission, telling others, and informing medical staff about this life-threatening allergy with life-changing complications. I hope that other, ‘new’ patients and Survivors do not feel as lonely as I felt during this episode of TEN. Please go to my website to connect with me.
