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Iain Fairbrother - My Experience of Precocious Puberty & CAH

 

A well-known Doctor once said, ďWe must treat the patient not the conditionĒ.

This statement however doesnít seem to include CAH.

My story began when I was six years old when I was diagnosed with CAH due to Precocious Puberty.  Of course back in 1983 the only emphasis was to treat the condition and the patient themselves where not given any thought what so ever.

After a routine medical at school the Doctor referred me to the local hospital after it looked like I started puberty at a young age.  A Paediatric Consultant then saw me who referred for investigations.  After that day I can honestly say I was left psychologically damaged due to the shear scale of tests and the controversial one photographs.  On diagnosing the consultant told my parents that I had an overactive adrenal gland.  No mention Congenital Adrenal Hyperplasia was mentioned.  So as well as being traumatised I was left to take tablets and to think I was on my own on this condition and nobody else had this.  The years went by not knowing what CAH was, a new Consultant came he didnít have a clue what it was, but to make it worse I was passed from one Doctor to the next probably for teaching purposes.  It was a difficult time I hated school the embarrassment of swimming lessons people saying I was to big for my age and of course not believing I was only a certain age.  How nice it would be to be normal.  

In that day and age however we did not have MRI scans, the Childrenís Act and Prostap injections like today (Prostap is a treatment for Precocious Puberty).  It was a very invasive procedure that was used.  In my case puberty was not suppressed, puberty did continue but at a slower rate.  Then came the embarrassment of ejaculation, which luckily I kept from the doctor plus even at that age I didnít know what it was.  Of course being kept in the dark came psychological distress with doctors still not finding the direct cause, which was more then likely pre teenage mood swings.

Of course the teenage years came would I be happier that my peers where catching up to me?  No.

The excitement of starting puberty as happens in most boys.  For me it had already happened and there was nothing to look forward to.  It was all there then of course came the comments you used to be massive, your shrinking etc.  And this was supposed to make me happier according to the doctors????.

It was only when I was 16 the truth came out when my Mum read an article of a boy who had the same condition and they had details of the RTMDC group (now called CLIMB).

When I contacted CLIMB I felt very angry and wanted to blow the Doctors away.  I felt and know Iíd been lied to.  I had not even been given a steroid card or medic alert.  I had the photographs destroyed (these had been taken as a child, see research papers page for controversies of medical photography), the Consultant wrote to me saying it took the medical illustration department a long time to find them, which leaves me to think was it necessary.  Which made even more angry and depressed.

Of course I left the present Consultant with strong words who then wrote to my GP and said I needed a Psychiatrist and the patient information from RTMDC  was irrelevant to me.  A cover up??.

I went under a Endocrinologist who just knew everything about CAH and had several on his books.  Why was I not referred to an Endocrinologist before? Surely any other Doctor is not qualified to take on this condition, would you have a mechanic to fix your car or a builder?  To me it is the same principle.  And now I feel any Doctor who does not have any expertise in this condition but takes it on should be made accountable.

Of course seeing the Endocrinologist just again made me depressed and angry I could have had such a better childhood, more help and support and contact with other sufferers.

The years have gone by and I have slowly learned to live with the condition and adapt.  Iím now on a see me if you need me basis with an excellent Doctor.  The examinations have gone, no more and the Doctor has put in my records I have never to be examined again.

I had a brief career as a Chef before deciding that I wanted to work with people so I did my NVQ in care and Iím now a student nurse for learning disabilities.

Iím now happily married with a boisterous two year old who is very healthy and none of my children will have CAH.  So by putting these problems of the past behind I can safely put two fingers up at the past and move on.  Of course sometimes even today I can feel down and wonder if my life would have been better if I had not had CAH.

What I have learned that no patient should be lied to or had half-truths given to them after all it is our body and we have feelings.  All I can say if any Doctor reads this "remember we are a patient not a condition and we all have feelings and we do not appreciate being an object of medical fascination".

 © Iain Fairbrother 2005

 

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