“However, the nightmare
was far from being over.“
Hello, my name is Cláudia Ferreira, I am Portuguese, and on July 21, 2019, my life took a complete turn. After an accident at work, I had to take medication for sore muscles. Pretty soon I got an allergic reaction which started as a supposed conjunctivitis and ended up the following day being diagnosed as a severe allergic reaction in the skin called Stevens-Johnson.
This disease usually covers up to about 30% of the body. Unfortunately, the disease progressed to its last phase within a few hours, thus becoming Lyell Syndrome, or Toxic Epidermal Necrolysis, which usually covers more than 30% of the body but, in my case, it covered 98%.
At this point, the medical team decided to put me for 21 days in a medically induced coma. During this coma my body was burned (outside as well as inside), I had deep wounds in the head and several parts of the body, I had surgery in the guts (which were also affected by the disease), various of my internal organs had failed and the whole of my skin was burned, including several mucous membranes (eyes, mouth, genital organs, etc.). After 40 days at the Santa Maria Hospital in Lisbon, I was discharged and could finally go home, still having open wounds on my heels, not being able to see normally nor to keep my eyes open, and without being able to take a bath, to eat or to walk by myself. I had become completely dependent on the care of my relatives. However, the nightmare was far from being over.
Meanwhile, I was able to recover, namely my skin. Regrettably, I had very little or almost no help from the Portuguese state. No products for my skin and eyes were reimbursed by the state and what I get from the health insurance during my sick leave is not enough even to pay the daily medication for my eyes.
Before I even dreamed of something like this would ever happen, I looked like this.
After 9 months of recovery, several medication trials, and countless visits to doctors, I found out that I would have to undergo a few surgeries, namely to my eyes (due to scars and skin that had grown next to the eyes, which affected tear production, and made it difficult to move the eyes), to my mouth (because my lips stuck to my gums), and also to my throat.
All my savings for college were spent on medication and medical appointments. The same happened to my parents’ savings. At this moment, we found ourselves completely helpless because we no longer knew where to get more money to pursue the treatments I needed to get back to normal.
It does hurt me a lot to know that after having been through all this – loss of my hair, nails, eyebrows, skin, body movements, 24 kg of weight, and keeping losing weight since I am still not able to eat, except for fluids and minced food – and after having spent 9 months at home trying to recover, I still find out that I will only recover after the aforementioned surgeries while finding myself with no means to do them.
It does hurt to know that due to the intake of a medication I am bound hand and foot.
I just want to return to a normal life.
