Where It all began (0-5 yrs):
Ever since I was born, i’ve had symptoms of PFS. The day I was born, I got pampers and the next day, I had a rash all over me. The doctors thought I was allergic to Pampers but this was the first symptom of PFS. This rash did not go away with other diaper brands. When my mom stopped breast feeding me, the symptoms got worse: skin rash, unexplained pain expressed by crying and chronic fever. The dermatologist diagnosed the skin rash as atopic skin, extremely sensitive to any environmental attack. My mom had to use special creams, as well as a special laundry detergent for allergic skin and had to iron inside out all my clothes! This never improved my condition.
Living in Europe at the time, it was considered lucky to be sick often in early childhood as it was said to build immunity for your life. Doctors would never be alarmed at toddlers who had regular fever because it just meant they would be healthier later in life. They also thought fever could be my first tooth growing in. My first real fever attack was at 6 months old, corresponding to my weaning. A month later, I had another fever attack.
When I got chicken pox around one and a half years old, it was much stronger and longer than a normal case of it. It lasted three weeks with never ending new spots and very high fever.
At the age of two, my family and I moved to another country and my sister was born. When the local pediatrician saw that my sister was never sick, he started to be alarmed. When the doctor reviewed the amount of medication prescribed over six months, it was way above normal. Our pediatrician sent us to see specialists at a University - Hospital. I visited each and every specialist they had and progressively came upon a diagnosis. They first diagnosed me with Still disease (now known as juvenile arthritis) but later narrowed it down to a form of CAPS. They also came to the conclusion that I had a delay in psychomotor development (delay in hand to eye coordination, speech, walking, etc). To improve this, I underwent physiotherapy and speech therapy several times a week. During all this, a nurse came to our house three times a week to give me Embrel injections. Even with this medication, I was still sick once a month and if we wanted to go on vacation, I would just end up sick because there was no medication there.
At four years old, I moved to North America. The health care system is much different than in Europe in the sense that there was no speech therapy or physiotherapy and no more nurse coming to our house. But, on the other side, the Embrel which was provided in Europe as compassionate use where as here, we could have the medication reimbursed by extended health insurance as it was officially recognized to help this diagnosis.
Before Embrel, I experienced fever attacks about twice a month but after Embrel, the frequency of episodes progressively decreased to about one every other month.