What is 22q?

Since the start of this new research project, I have found myself having to explain what 22q is and how it affects individuals. Now, this next bit may not be exact science, but I have found that my analogy seems to help many people to understand 22q a bit better.


So, let’s pretend that we have a sweet shop. To keep it real to my own experience of old fashioned sweet shops (the ones that didn’t really sell anything except sweets in big glass jars, newspapers, and magazines), let’s call the shop “Peggy Black’s” (yes – a real sweet shop from my childhood).


Now, let’s imagine taking 2 children to Peggy Black’s as a big treat. When we get just inside the shop, the children stop and gaze at all of the various sweets, chocolates, potato crisps, and “minerals” (i.e., soda drinks). In fact, if we want to be a bit technical about it, there are about 180 different types of confectionery products in the shop – across a few different categories – e.g., boiled sweets, chocolate bars, gum, and soda drink.


The children would not be in the slightest bit interested in that last bit – but we are – because the 180(ish) sweets available in these categories represent the various “possible” manifestations of 22q across the various domains of development that we are interested in (e.g., medical, social, school, psychological).


So, what do the children get to do?


Easy – just let them go and grab as many sweets as they can carry. They must remember, however, that this is their one and only chance in their whole life to get as many sweets that will do them forever.


I guess that this might be the result:

  1. Some would be able to grab more sweets than others.
  2. Each child would pick some similar sweets and some different sweets from each other.
    I think this might be a good reflection on what the reality would be.


Now that they have the sweets, they might start to find that whilst some particular sweets might be okay for them, others might make them sick (or very, very sick). They will probably find that those sweets that made them sick might not make the others sick – or that if they do, they might not make them just as sick.


For those who are looking after the children, there will always be that fear when the child starts to eat a particular sweet:

  1. Will it make my child sick?
  2. Will it make my child really sick?
  3. Why did it make my child sick and not so for the other child?


So, the point here is that:

  1. Not everyone will get every condition / issue that is on the “menu” for 22q (i.e., the 180ish sweets).
  2. No-one will get away without having to get something from the menu.
  3. Regardless of what you get from the menu, or how many items that you get, it will probably be a bit of a waiting game in most circumstances to see the effect (if any) on the individual.


So, I hope that this example makes sense and helps you to understand 22q a little better.


Conor 🙂