What is CHARGE syndrome.

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.

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