Hi ! My name is Hanna, and I have 22q11ds. I only found out that I had this syndrome when I gave birth to my eldest daughter, at the age of 20 years old (she is 17 now, and she has the syndrome too).
As a child I had a fairly normal life, although my mother always told me that I only started talking around the age of 3. In primary school I also had to go to speech therapy and my results at school have never been on the high side, but not so bad that I could not work or that I had to drop out of school.
I had a small heart operation when I was 6, which was probably linked to the syndrome but it was nothing alarming for the functioning of my heart.
What I do remember from my childhood is that I never felt like I belonged anywhere. I had very few or sometimes no real friends at school – I didn't mind being alone anyways, besides I did have friends outside of school. I had some trouble with math, too. I used to sit in a lot by myself in my room or in the local library or somewhere outside in a playground. Having divorced parents who live far apart, I didn’t have any extracurricular activities, so to pass the time I would read books or listen to music.
If only I had known that all of this came from the 22q11 syndrome, I definitely would have called for extra help! Looking back, I realise that my parents did their best, especially since they didn’t know about my 22q11ds. I had a normal childhood, got a certificate of care, I am happily married and I have two fantastic children. I do think my childhood would have been different if my parents had known about my syndrome. However, I am proud of what I have achieved.
Today, as a 37 years old, my greatest challenge is to deal with the physical pain that the syndrome brings. I feel young in my mind but my body often feels like a 80 years old who has more and more trouble walking long distances, sitting in large crowds in family gatherings, remembering things during moments of stress. I have to take everything easy to spear my tense back and my painful legs. I have to deal with all this while I am only 37 years old and I should be full of life and energy.
Seven years ago I would have felt sorry for myself, but not anymore. Every day, I try to understand and accept the syndrome and all its facets. I unleash my creativity and paint with all the colours, I still listen to music. My motto at the moment is to live from day to day and see what the day will bring, live every day to the fullest and enjoy your life even though you have to learn to live with 22q11ds.