India CAH Support Group
Culturally, families in India are generally very private, and prefer not to share their lives so much with other people. However, patient support groups owe their success to those people who are willing to step out and share their stories. Feelings of isolation and despair quickly lessen when you speak with another family who have experienced similar circumstances, understand how you feel, and are there to offer support and encouragement.
There are a number of patients and families living with CAH in India who are keen to help, and willing to be contact resources for people looking for help and direction in India.
MR SANJEEV SAHNI
Mr Ajay Baby
The fledgling Indian CAH Support Group is looking to groups in other countries, and determining a path of its own. Mr Sanjeev Sahni writes:
I have been looking to other supports groups, how they are working and find that they are deeply involved with their members throughout their life, not only in giving free medications they are actually helping them like:
1. They should be under the care of a specialist who is experienced in the management of CAH. This may be a paediatrician/paediatric endocrinologist/adult endocrinologist or reproductive endocrinologist.
2. The facilities available must include easy access to laboratories measuring the important hormones in CAH, including 17-Hydroxyprogesterone, androstenedione and renin estimations
3. Every parent/patient with CAH should be informed of the relevant patient/parent support group.
4. Genital surgery should be performed by a surgeon who is experienced in genital reconstruction in children. This may be a paediatric surgeon/paediatric urologist/ gynaecologist. Follow-up of gynaecological problems in both adolescence and adult life should be made available.
5. Counselling should be given for the emergency treatment of intercurrent illnesses with appropriate written instructions given. These instructions and the necessary teaching should be repeated at intervals.
6. There should be access to a clinical psychologist/psychiatrist throughout all stages of care. This involvement should preferably be initiated at diagnosis and particularly in relation to any genital surgery and psychosexual problems.
7. There should be long-term seamless care throughout all age groups between childhood, adolescence and adulthood.
8. For adults with CAH, there should be access to infertility treatment for women, counselling available by a clinical geneticist, appropriate testing of members of the family, the discussion of dexamethasone treatment in pregnancies, and bone densitometry available to assess osteopenia/osteoporosis.
9. The parents/patient should be offered access to a second opinion in the event of their being unhappy about their/or their child's management. In the event of inadequate control, a blood endocrine analysis/profile and renin should be available."
It is wonderful to be associated with this developing Indian CAH Support Group, and CLAN would like to sincerely thank members of the International CAH Support Group community for the support they are giving to the Indian group as it seeks to determine and meet the needs of its own people.