Experience report – Celia

Hello my name is Celia, I myself am affected by AA and I am a mother of a boy who also has this disease. We live in Dortmund and I am the contact person for the city of Dortmund and its surroundings for boys whose date of birth is 2007.

Our history begins in 2012. My father suddenly fell ill in Portugal, I got transferred to another department within the company, and at Lucas’ Elementary School there was going to be an “open day” for all children finishing in 2013. So my sister and I flew to Portugal to be with my father, who was very bad and who was in an intensive care unit. To visit the hospital, we drove daily from Portimao to Faro. My sister told me almost every day that I had extreme hair loss and I absolutely had to see a doctor! My hair was long and I also noticed that it was getting thinner. My husband also spoke to me more and more about this, because my pillow as well as the bed was always full of my hair. Honestly? I did not worry about it. I had quite different things to worry about, not my hair. I flew back to Germany 10 days later and left my sister in Portugal with my seriously ill father. I had to look after Luca who had his birthday on that very day. My father died a short time later in Germany and it was terrible.

I was my daddy’s girl and I took this loss very badly. Just a month later I tried to make a braid in the morning and it occurred to me that on my head, on its top, hair was missing! I hysterically awoke my husband and shouted that he should see and tell me what was wrong up there. Eyes wide with shock, Roger finally said “oh sh….., you’ve got a really big bald spot there”. I was completely shocked and did not know what to say. On the same day I started looking for a dermatologist in Dortmund. The doctor was very nice and said that I had Alopecia Areata and that I would lose even more hair. In addition, I was told that my hair roots were ‘frozen’ and that I should have a lot of patience, but the only question I had was, ‘Will my hair grow back again?’ I bought a cortisone ointment and a hair tonic and went home with this diagnosis, which I could not believe at all. In November, I lost all my hair! With every fallen hair I was losing myself. I was depressed, sad, aggressive and pitied myself. I left the apartment only to work and isolated myself more and more. There are only two photos of me from this time. Help? I did not need it. It was easier to just feel pain rather than to do something about it. I was in a huge mess and I was going to stay there for a long time.

In 2014 my hair was back! At the same time, my mother-in-law pointed it out to me that Luca had two small bald spots on the left of his head. I had already noticed it myself, but somehow never thought that it could be AA. Why not? Looking back now, I really cannot say! I asked him if he had cut his hair in the school!? Luca denied it and I did not want to believe him, so eventually I got almost hysterical, insisting he should tell me the truth, but he told me things were really the way he said. Had Luca cut his hair at school? NO, of course he had not!! My husband drove him to the dermatologist and we got the diagnosis AA. The curtain fell, so to say, and I found myself again in a state of misery that words cannot describe. Can it really be that my poor boy got everything bad from me? I am a very loud person, Luca is a loud child. I’m always straightforward, and so is Luca. I have to tell each and every person my opinion, and so does Luca. Too loud and too ‘all-over-the-place’. At times, it can be very tiring for people who are not used to my communication style. I have asthma – Luca often has problems with coughs. And now? Does he have AA? It was terrible and barely comprehensible to me. I researched on the Internet and came to the website of the AAD and read the articles and saw the photos of bald adults and children and stopped crying. I was so lost and shocked, and terribly sad. I immediately wrote an email to Claudia and my first contact was Susi. At last I could talk to someone who had the same feeling as I did. At last, no one said “oh, it is only hair, the main thing is, the child is healthy” etc. I felt understood and everything was good, at least for that day. I signed up for the Come Together event in Wiesbaden.

I drove there with a friend I’d met in the AA forum on Facebook and I was very much looking forward to it. When I arrived I was totally shocked. Everywhere there were these people – adults and children without hair. Oh, how terrible! How could they be so cheerful while I was so unhappy? Having no hair is terrible and losing hair you lose all the joy of life! I was dead beat. I could not talk to anyone, my facial expressions were speaking louder than any words, and on the whole I was very busy with mourning, mourning, and mourning. I spent my two-hour return bitterly crying, I screamed and sobbed in my car like crazy. The next day I made an appointment with Dr. Lutz. The appointment was due a few months later. Luca’s left side was completely bald up to his ear, and small bald spots spread across his whole head. Luca should take zinc and iron tablets and apply cortisone ointment to his scalp. All right, the treatment could begin. I was glad I could do something.

The swimming lessons again put me to the test. Luca did not want to participate in swimming lessons because of his bald spots and because moms and dads sometimes came to the school to dry their hair. I got him a medical certificate and thought the matter was over! So we could continue to live with our little “secret” without anyone noticing. Luca’s remaining hair was now so long that the bare spots could be hidden well and no one noticed them. Only a few knew.

I lolled myself into a false sense of security.

Some time after he started his treatment, Luca told me he did not want the treatment any more. His hair hurt. And he also wanted to participate in the swimming lessons. “Mom, I do not care what others say, I want to swim.” Hey now, what is that supposed to mean? I could not believe it, it was like somebody had hit me on the head. That could not be. My mind brought up strange ideas. Like, I would set the alarm clock and smear his head with the ointment at night. “Haha, I’m a genius!” This is how it should be done!

How crazy do you have to be to get on such an absurd idea? Quite simply, I Celia, neither a sinner nor a saint, sometimes come up with such thoughts. Of course I did not set the alarm clock and of course I did not put ointment onto his head at night. But I was close to giving this a thought.

A short time later I talked with Claudia and Susi about my course of action. I was not able to write the letter to Luca’s classmates’ parents, Susi did it for me. I would like to take this opportunity to thank you again, dear Susi. Claudia sent me a brochure for each family and I went to meet the parents. The school meeting went great. We read the book “Samu’s Pride” with the children and then the children were allowed to paint Samu on copied sheets of paper. All the children had a lot of questions and I was able to answer them well. Luca opened up and told me how he was coping. “Man, I have a brave child.” I could not believe how strong Luca is and how weak I am. He opened my eyes for me rather mercilessly and I immediately became the strong and combative Celia, which I could always rely on. Accept this disease and do not to be controlled by it. Do not put up a fight but make the best of it. Sure, AA is and remains a hell of a situation, we cannot do anything about it. But it is part of us and accompanies us in our everyday life, whether we like it or not. It is always present. But our motto has been “better to have nothing on your head than nothing in your head”, just like our Susi likes to say.

Every single child wrote their well wishes and expressions of love to Luca on small pieces of paper. It was a very touching moment. My heart started beating again. Luca and I rose from the ashes like a phoenix. It helped me so much to work with the children to deal with this disease and find my strength again. Actually, I would not be standing where I am now, if Luca had not taken the reigns in his hand and if we had taken a very different path.

Thank you Luca, you are wonderful!

In October we had a contact person meeting in Hamburg. It was just wonderful. We had so much fun and joy, we are a great team. Most of them did not recognize me. What Diana said to me “this woman (Celia) was not with us in Wiesbaden”. No, she was not!