Hello. My name is Vanessa and I'm a 45 year old woman with chronic illness and disability.
I was born with a very rare pituitary disease called Panhypopituitarism (PHP), which is a clinical syndrome of deficiency in pituitary hormone production. In my case it was caused in utero due to Growth Hormone (GH) Insufficiency and other health issues.
My pituitary gland is only 60% in size compared to normal and I have an absent pituitary stalk, also known as Pituitary Stalk Interruption Syndrome (PSIS). What this means is that I do not produce Cortisol and have low levels of Thyroid function, no male and female hormones which means that I am in the pre-menarche / post menopausal range when my blood is tested. I have been on Hormone Replacement Therapy in the past and I have just started again.
A major factor of panhypopituitarism and PSIS is that in 1971 there were no warnings about smoking and drinking affecting the development of the foetus due to reduced growth hormone insufficiency and other hormones such as cortisol.
Below is an excerpt from a medical article which helped to explain what happened:
"During pregnancy, the hormonal systems of the mother and fetus are intricately interconnected
to ensure normal fetal development. Accordingly, maternal alcohol consumption during pregnancy can interfere with fetal development, not only directly, through adverse effects exerted by alcohol that crosses the placenta and enters the fetal bloodstream, but also indirectly, by disturbing the functions and interactions of maternal and fetal hormones.
In both the mother and the fetus, alcohol exposure can impair the functioning of the hypothalamic-pituitary-adrenal axis, which regulates the body’s response to stress; the hypothalamic-pituitary-gonadal axis, which controls reproductive functions; and the hypothalamic-pituitary-thyroid axis, which regulates the metabolism of almost all tissues.
In addition, alcohol can interfere with the activities of growth hormone and insulin-like
growth factors, which promote body growth and activity. Some of the effects of maternal alcohol
consumption on fetal hormone systems may contribute to the adverse effects observed in children with fetal alcohol syndrome and related disorders. " (Tze, W J, H G Friesen, and P M MacLeod, 1976)
This lack of Growth Hormone meant that the bones in my feet didn't develop in utero and I developed severe Congenital Talipes equinovarus aka Clubfoot. My mother was told that I wouldn't be able to walk until I was at least 3 years of age. She was determined to prove them wrong, propping me up against a wall and helping me strengthen my legs and calf muscles so that later I would stand by the age of 2. She also fed my mind and taught me to read and write by that age, which helped me with the pain and discomfort of manipulations, allowing me to escape with the joy of books and stories that helped a great deal.
I have had several operations on my feet including the cutting and manipulation of tendons, breaking of bones, chiselling of some, and setting them with a surgical staple in my Calcanae. I then had both my legs in plaster from my toes to my hips. I was in a wheelchair for several months. After the casts came off, I had to learn to walk again. My physical limitations meant that my mother had me focus on learning, creating and finding positive outlets which meant that I had a higher quality of life and through reading so many books, a curious and open mind.
The under-developed pituitary gland led to a lack of Growth Hormone and short stature throughout my life. My bone age was 2 1/2 years behind my chronological age when I was tested at age 13. When I was 5 I looked 3. When I was 8 I looked 6. When I was 16 I looked 13 etc. When I was 16 I went onto Growth Hormone (GH) and reached the height of 5ft 1 1/2 inches (152cm). It wasn't until I reached my mid 30s that I was asked to provide ID to show that I was over 18. I have a youthful face and when I was a primary school teacher I was often mistaken as a student aged 12. Seriously.
Due to lack of male and female hormones, I have never had a natural period and I cannot conceive without a lot of intervention and even then with a lot of serious health concerns if I tried. Fortunately, I married a wonderful man 23 years my senior who has two adult children in their 30s and I have a grandson from the eldest son. I love my stepsons and my grandson and feel blessed that I have them in my life, despite the fact they live in Tasmania and myself in Brisbane, QLD Australia. I have a habit of adopting other people's children as members of my soul family and love handing them back afterwards
I am now retired as a primary school teacher due to the fact that the schools were not disability friendly and I was made to stand on uneven ground for extended periods during recess, lunch and sports duties. When I asked to be given a different task, I was told that it was part of the duties of a substitute teacher and just get on with it. This meant that later that evening and the next day I could barely walk without screaming in agony.
When my father-in-law passed away in 2000 we moved states to Tasmania, Australia from Wollongong (Sydney), Australia and I retired and after some training became a website developer and Digital Media publisher, which I continue to do today. I work for my own business where I work around my health problems, working my own hours and loving what I do.
At age 19 I attended the University of Wollongong and started a double degree in Mathematics and Computing Science. I loved some subjects but the Theory of Mathematics and Electronics I struggled with. I began having migraines from stress and after a year switched to a 4 Year Bachelor of Education degree which i studied part time for eight years. When I wasn't in class or doing assignments I was studying my condition and psychology. I was like a sponge soaking up all the knowledge. I loved the majority of my Primary Education courses and graduated in 2000. Within my degree I specialised in Information Technology and Communication which is where I developed my love of creating multimedia resources and websites.
I have often said that without my health issues and disabilities, I would not have the drive and determination. I would not be the person I am today. Thanks to having to sit in one place as a baby and toddler, and not as active as my peers growing due to chronic fatigue, I focused on reading and learning, enriching the mind and was tested as an IQ of 154 via the mensa website at age 22.
I am working with a local charity that supports adults with disabilities, The Spirit of the Dragonfly, as their website developer and social media marketing consultant. They do amazing work with people who have a wide range of disabilities. They fundraise to support their dreams towards independence, travel and other experiences. One of their projects is to send members that qualify on a cruise and as a group bond and grow through their experiences. Some of the members live at home or in group homes and this gives them a sense of independence.
I love my life and am thankful for everything I have experienced.
Article Sources:
Tze, W J, H G Friesen, and P M MacLeod.
“Growth Hormone Response in Fetal Alcohol Syndrome.”
Archives of Disease in Childhood 51.9 (1976): 703–706
https://pubs.niaaa.nih.gov/publications/arh22-3/170.pdf
Orpha.net. "Pituitary Stalk Interruption Syndrome"
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=95496P
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Regards,
Vanessa Pike-Russell
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