I have a rare disease. It is called CPHP (Congenital Panhypopituitarism ) and in my case was caused by an underdeveloped Pituitary Gland and PSIS (Pituitary Stalk Interruption Syndrome) due to low levels of Growth Hormone in the womb.
I take Cortisone/ Prednisone plus Throxine since I was diagnosed age 13. It has a huge impact on my health as my pituitary doesn’t work properly so I don’t produce Cortisone , male and female hormones or growth hormone. I reached 154cm after three (3) years on Growth Hormone injections- aged 16-19 years
. I didn’t develop naturally and went on HRT (Hormone replacement therapy ) aged 20 when I stopped growing. Until then I had a pre-pubescent body. I was told it was very unlikely that I would fall pregnant and carry a child to term. I went off HRT aged 24 when on my honeymoon since the Endocrinologist said my body might kick in and start producing male and female hormones. It didn’t and I went through change of life / menopause - which was devastating.
Cortisone is an immunosuppressive which means I have to be vigilant when it comes to staving off colds and flu plus I heal slower than most people plus infections last longer. I have to be careful not to become dehydrated or lower electrolyte levels or I can fall in a heap.
When I was first diagnosed at age 13 the words Addison’s Disease (secondary) were added next to my name and I knew my life would never be the same. My Endocrinologist Dr Ray Slobodnuik (deceased) told me to research Endocrinology and arm myself with knowledge on how to keep myself well and know when to stress dose or go to hospital.
Before I was diagnosed I had severe pain I the abdomen and was scheduled for an appendectomy as we thought I had appendicitis. The put me on the drip (saline infusion) and after a while, the pain went away. They were insistent that I was just afraid of the operation but thankfully mum believed me and the operation was called off. I was in adrenal crisis and I could have died if operated on.
When I was diagnosed aged 13 they did a bone age scan which showed my bone age was 3 years below my chronological age. This explains why I was always 2-3 years shorter than my peers.
It’s been an interesting 47 years and I wouldn’t be alive today if not for my mothers fierce material instinct and taking me to many doctors before someone referred me to an Endocrinologist in 1984.
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