Wednesday 20 July 2011

How To Support Your Turner's Syndrome Daughter/Wife/Friend

The fact is I am on here because I have Turner's Syndrome i.e. no ovaries.  It is a chromosome disorder that can lead to several life changing issues.   Here's a few thoughts as to how to best support that special little lady in your life.

1) Sociospacial Awareness:
Many TS patients have a Turner Neurocognative Phenotype (hope that is spelled correctly). Basically, this means that she may have difficulty with things like learning to walk as a baby, balancing, hand-eye co-ordination, sports, typing and driving.  She may have dyscalculia i.e. number blindness.  So she may need extra tuition with these things at school.  If learning to drive, I recommend starting out on automatic first.  Try maybe a dance class or yoga to help with the hand-eye co-ordination/balance. 

2) Clothes:
This is a constant source of frustration, especially as she gets older.  Usually trousers and jackets will need altering.  A sewing machine may be a good investment. 

3) Health:
Watch out for things like weight gain and encourage her to eat a healthy diet.
Your endocrinologist may suggest cardiac checks.
Encourage her to drink enough water as TS patients are susceptible to bladder/kidney infections.

I know that there are several TS ladeez out there reading this, so please chip in your thoughts and additions to the list. xx

No comments:

Post a Comment