Discussions By Condition: Congenital conditions

Mrs

Posted In: Congenital conditions 0 Replies
  • Posted By: Anonymous
  • September 16, 2010
  • 03:34 PM

Does anyone know of any self help groups for people with First Arch Syndrome? The ones I know relate to children and not adults.

Also I would like to know of any professionals with this disorder, who can inspire me. I am a recently qualifed Adult Literacy Teacher. However my experience of the Education and Health system have been awful.

I am fed up with informing dentists and doctors about my condition. A trip to the Dentist is a nightmare because of the lack of understanding and pain.

My physctraist has no understanind of the disorder and simply refers me to specialist who cannot look after the mental affects of this condition.

My specialists refer me back to the physcatrist in instances like this.

I feel that there needs to be more education about this. I am fed up with telling doctors how to treat me when my bone conducted hearing aid gets infected or I experience awful pain.

The condition makes it hard for me to read as I have no sight in one of my eyes and my hearing is limited. I feel very alone.

I would love to meet a professional with my illness and see how they cope with this.

Often people disregard it as they see me doing better in my professional life than them, if only they realised how much more effort i have to put into doing my work, than the average person. This coupled with the effects of Manic Depression is doing my head in.

Please help. Any support you can give would help. Thank you.

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