About us

As an Economics and Philosophy student at Erasmus University Rotterdam (NL), I joined the Visiting Undergraduate Student program at Harvard University (US) in 2016. Friday morning March 10, 2017, after a very bad night, I woke up with a fever in my student house in Cambridge.

A few hours later I would catch a plane to Cabo San Lucas with my Swiss roommate Kevin Junker to celebrate Spring Break with a group of students in Mexico. We thought that it would pass and with acetaminophen it indeed was a lot better. Once arrived however, I still didn’t feel well. I then became completely disoriented and subsequently everything went really fast. A nightmare followed.

In the end, the Herpes Simplex Virus turned out to have caused a very serious Encephalitis. Fortunately, Kevin acted very accurately and saved my life. A medical fight ensued. First at a local hospital and then after being transported by a specially arranged air ambulance by a team of great doctors at the Sharp Memorial in San Diego. After being sub-comatose for a while and after the Acyclovir medication did not seem to have worked properly after the usual 3 weeks, specialists from America, the Netherlands and France were puzzled. An extremely stressful period followed (especially for my family because I was not aware of it myself) and very difficult decisions were made outside the protocols. In short, I eventually survived and was allowed to be repatriated to the Netherlands at one point.

Unfortunately, it soon turned out that an autoimmune reaction had caused me to get a second brain infection, this time an Anti-NMDAR Encephalitis. Another severe medical treatment followed, but now in the Amsterdam UMC. I have only now understood that surviving this combination of two brain infections is rather the exception than the rule. So, I was lucky! Based on my ‘case’, a number of protocol items were subsequently adapted at Sharp Memorial. I managed to recover well with a lot of guidance and attention from the people around me. However, I myself cannot compare it with the past, because I have lost more than 21 years of my memory. I no longer even recognized my mother, brother and sister… The question I now ask myself, also based on my Philosophy study, is: “Who am I if I do not know who I am myself?”

I am proud having been able to establish the ItsME Foundation in 2019 to enable more scientific research for both Encephalitis and Meningitis. I sincerely hope that you will support us so that eventually more people can survive these serious diseases.

It is Christmas 2002 and my husband Bart Verdegaal and I are fully enjoying our 14 month old twins Niek and Loek. Thursday January 2 Bart suddenly does not feel completely well. He mainly suffers from ear pain.

The doctor’s advice was clear: “Spray your nose and it will be fine.” At night he already felt very sick and had a high fever in the morning. We could see the doctor in the course of the morning. Suddenly Bart’s situation deteriorated and he was no longer approachable. Then everything suddenly went very quickly. Bart was taken to hospital in our hometown by ambulance. Frightful hours began.

Bart turned out to have a bacterial Meningitis: the ear infection had spread to the meninges. Since his situation did not improve, he was taken to the Amsterdam UMC the next morning. Fortunately, the treatment in the Amsterdam UMC was successful and after about a week Bart turned 39 in the hospital. He regained consciousness, we were able to talk to each other again and were happy that things were going so well again so quickly.

After another week, the doctors decided to stop the antibiotics and Bart was allowed to go home. Rehabilitation was necessary, but we were so glad this nightmare was over. Everyone who had sympathized intensely in these bizarre weeks already emailed and called and was looking forward to Bart coming home. What a party, we all thought. However, when I was in the car to pick him up, I got a phone call from the Amsterdam UMC… It was not going well with Bart. What is on your mind by then, so many questions, so many fears, so much uncertainty.

Bart appeared to have a new infection (a complication that occurs more often), and this time the attack came in a weakened body. The damage was tremendous, he could no longer breathe on his own. Those were grueling days. Days turned into weeks, in which we all hoped for a miracle. However, despite the best efforts of the medical team, the situation did not change and we were advised to “stop the treatment.” At the beginning of February we had to let go of Bart – a super proud father of our twins and my dearest buddy.

I am honored to assist Jur in his ambition to enable more scientific research for both Meningitis and Encephalitis. I sincerely hope that you support the ItsME Foundation so that future patients do not have to suffer the same fate as Bart.