I thought I would share about what my syndrome is. CHARGE syndrome is an acronym each letter standing for the part effected. It is a genetic syndrome but is very tricky to get into so I won’t get into that.
C is colabomas of the eye. I have bilateral colabomas of the optic nerves. My vision is 6over 60. I have little depth perception.
H is for heart my heart is ok.
A is artresia I didn’t have this but many have blocked nasal passages and they also have artresia of the oesophegas.
R is retardation of growth development. We use restricted. I have no growth hormones and was on HRT. I am also socially behind those my age but over the years I have improved.
G is genital abnormalities I’m prety good but have no reproductive organs.
E is ears I am profoundly deaf and wear hearing aids.
People with CHARGE have a strong fighting spirit, wicked sence of humour and love the most.
I have friends all over the world and we are a close family.
One thought on “What is CHARGE syndrome.”
Ellen, that is the best explanation I have read. You are such an an amazing and inspirational person. There is no stopping you.