Dispelling the Taboo of Intersex Conditions

September 10, 2014 admin Sexual Health

Coming together – the value of support groups

Meeting other people with CAH and other intersex conditions was a great help. Realizing that the majority of people with intersex conditions had similar experiences to me, with the same lack of information, inspired me to do support work. Knowledge is the key to understanding and coping. I worked voluntarily for many years with CLIMB (Children Living with Inherited MetaBolic Diseases) and CAHG (CAH Support Group of CLIMB) before founding AHN (Adrenal Hyperplasia Network – www.ahn.org.uk) in 1999. AHN works with professionals and researchers, as well as other support groups such as Androgen Insensitivity Syndrome Support Group (AISSG), Rokitansky Support and Advice (ROSA) and Genetic Interest Group (GIG), to improve treatment and provide support to people of all ages, although we focus on teenagers and adults. Doing this also inspired me to change career from being a quality engineer to researcher. I turned the negatives on their head so they became positives.

Growing up can be difficult enough for teenagers. With intersex conditions, it can be made even more difficult when there are few, if any, information or emotional support services available and limited empathy in professional encounters. Support groups can be a great help to parents, children, teenagers and adults in providing much needed information about the condition itself and its treatment, meeting with others and sharing experiences in a safe environment. Knowing you are not alone can make an enormous difference. Professionals too can learn a great deal from support groups.

Increasingly, professionals are realizing the importance of careful preparation, counselling and support to those affected and their parents and family members at all life stages – yet more needs to be done and to be available more consistently. The AHN support group provides consultation and advice to professionals and works with them to produce patient-friendly information for Buy Nexium in Australia sheets. Members provide input to professional training, including through contributing to medical training films and speaking at conferences as well as providing a direct service to those affected and their families through website, telephone, email and written support as well as individual and face-to-face meetings.

However, there is also a need for challenges to be made to the way that intersex conditions are perceived at a societal level – changing attitudes from childhood onwards, including, for example, through sex education, by promoting awareness and dispelling myths. AHN is thus involved in the Expert Patients initiative (available at www.doh.gov.uk) as well as media work.