You work your way through the list, heart problems - tick, palate tick, speech and language tick, learning difficulties tick. Then you find a couple of nice ones to have, abundant scalp hair (Sarah is always receiving complements on how nice her hair is) tapered digits (My Dad always said that she had the fingers of a concert pianist).
Oh ! - Your eyes alight on another section and you start to read
Psychiatric/Psychological
141. Bipolar affective disorder
142. Manic depressive illness and psychosis
143. Schizophrenia
144. Rapid or ultrarapid cycling of mood disorder
145. Mood disorder, depression
146. Autism spectrum disorder
147. Schizoaffective disorder
Mental illness is something that we find difficult to handle and when many people think of mental illness they have visions of some crazed fictional character locked away for the good of society.
Last autumn Channel 4 broadcast a very informative series Bedlam - on the work of The Bethlem Royal Hospital the oldest psychiatric institution in the world focusing on subjects such as anxiety, psychosis and breakdown.
If you break your leg it gets put in a cast everyone asks how you are after a few weeks the cast is removed there is a bit of physiotherapy and you are cured. However there remains a great stigma around mental illness and this is something which is not normally discussed as everyone is afraid to speak to someone recovering from mental illness,
Consequently I am not surprised that when the subject of mental illness associated with 22q comes up for discussion at conferences or in support groups it gets a lot of attention from parents.
In the UK the incidence of schizophrenia is about 1%, however studies of people with 22q indicate that the incidence of schizophrenia could be as much as 25% which makes 22q the most common genetic cause of schizophrenia. Research suggests that that one or more genes may be responsible and the search is now on for the culprit.
As I wrote in my Day 13 post Sláinte, at the VCFSEF Conference in Dublin last year there was a lot of discussion about the effect of 22q on cognitive ability. One theme which appeared regularly was the subject of anxiety and its impact on mental health as research had identified a degree of correlation between pre-adolescence anxiety and the likelihood of psychiatric symptoms in late adolescence.
It was suggested that parents should try to work with schools and in social situations to reduce stress and anxiety which in turn could have beneficial effects on mental health in late adolescence.
Suggestions included;
i) close monitoring of anxiety levels during stressful periods e.g. new school, increased school demands, bullying, leaving home etc
ii) ensuring expectations are not set at too high a level which the individual with 22q just can't meet.
iii) It’s important for parents to promote multiple areas of social activity. Young people with 22q should join a club that they attend regularly to ensure they can get regular social interaction without relying on being invited out with friends.
Whilst it is important for parents to be aware of the possibility of mental health issues so as to spot early signs, I think it is important not to get too hung up on this issue. From my perspective the key is to provide an environment for a child or young person with 22q where anxiety is kept to a minimum and they can develop and their own pace thereby maintaining a high level of self esteem.
#22qAwarenessDays coincides with Mental Health Awareness Week and more information can be found via the following link http://www.mentalhealth.org.uk/our-work/mentalhealthawarenessweek/
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