Psychosocial and Support Groups CAH

Psychosocial CAH:

* would probably affect girls more than guys

Morgan JF, Murphy H, Lacey JH, Conway G. Long term psychological outcome for women with congenital adrenal hyperplasia: cross sectional survey. BMJ 2005; Issue 330: pp 340-341 (12 February)

found that women with CAH are psychologically well adjusted and do not show substantially increased psychiatric disorder or deficits of social adjustment or decrease in self-esteem compared with population data. Low levels of sexual activity and higher levels of non-heterosexual orientation are indicated. Conclude that women may struggle to adapt, but are psychologically robust.

Ogilvie CM, Crouch NS, Rumsby G, Creighton SM, Liao LM, Conway GS. Congenital adrenal hyperplasia in adults: a review of medical, surgical and psychological issues. Clinical Endocrinology; Volume 64, Issue 1: pp. 2-11 (January 2006)

- decreased fertility in women because unsatisfactory intercourse, higher prevalence of polycystic ovaries leading to ovulatory dysfunction, and elevated follicular phase progesterone levels causing failure of implantation.

- more reluctant to establish intimate relationships (higher levels of penetration difficulties, persistent pain during intercourse, and lower attainment of orgasm)

- possible that the early exposure of the brain to hyperandrogenism may be responsible for the psychological outcomes (low heterosexual activities)

- tendency to play ‘boy toys’ and more likely to accept boys as playmates

- in males, infertility and oligospermia (?)

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Congenital Adrenal Hyperplasia Education and Support Network

http://www.congenitaladrenalhyperplasia.org/

“Communicating with other people or families with CAH is an essential part of living with Congenital Adrenal Hyperplasia.”

http://www.congenitaladrenalhyperplasia.org/people.html

Some of the organisations:

1. CARES Foundation

- in New Jersey

- family fun days

- talks by professionals

- stresses importance of screening

Packets for parents

- newborn screening packets given to qualified parents

- contain screening materials and information for parents and physicians

http://www.savebabies.org/NBS/packetsforparents.php

United States

Alabama	Illinois	Montana**	Rhode Island
Alaska	Indiana	Nebraska	South Carolina
Arizona	Iowa	Nevada	South Dakota
California	Kentucky	New Jersey	Tennessee
Colorado	Louisiana	New Mexico	Texas
Connecticut	Maine	New York	Utah
Delaware	Maryland	North Carolina	Vermont
District of Columbia	Massachusetts	North Dakota	Virginia
Florida	Michigan	Ohio	West Virginia*
Georgia	Minnesota	Oklahoma	Washington
Hawaii	Mississippi	Oregon	Wisconsin
Idaho	Missouri	Pennsylvania	Wyoming

Canada

Manitoba
North West Territories
Nunavut (West)
Ontario*

*Screening is approved but not yet implemented
**(through pilot program-optional for $4.00)

http://www.caresfoundation.org/

http://caresfoundation.org/what.html

2. CLIMB CAH Support Group

- formed in 1992..sub group of Children Living with Inherited MetaBolic Diseases

(CLIMB)

- made up of members of families and professionals

- conduct meetings, national conferences, newletters

- members can consult the professionals

http://www.cah.org.uk/

3. CAH Support Group Australia

- improve knowledge and services for those diagnosed with CAH

- provide education and support

- magazines which contain outcomes of current studies, practical hints and services,

‘Ask the Dr’ questions and personal stories

- Annual Symposium: lectures from specialists and Q&A sessions

http://www.cah.org.au/

Support Groups in Malaysia?

Hi All,
Jun. 19th, 2006 7:13am

I am Malaysian, I married with 3 kids. Unfortunataly I have 2 kids with CAH first child boy now 4 years old and the latest is girl was born on 01/06/06 with CAH. Thanks to god that my second baby is girl is free from CAH now she is 11 month years old. Here in Malaysia not many people understand about this and dont even bother to know it and if they know also they thing is weird. I hope you all can share with me about this CAH. many thank to all.

Thank You.

http://www.congenitaladrenalhyperplasia.com/mb/kids/0006370128/?reply=yes

(Posted by: Vivian)