Something I am working on.
A group of people living with PHP are sharing their stories to raise awareness of this rare condition which can be life-threatening.

What is Panhypopituitarism?

"Panhypopituitarism is a condition of inadequate or absent production of the anterior pituitary hormones. It is frequently the result of other problems that affect the pituitary gland and either reduce or destroy its function or interfere with hypothalamic secretion of the varying pituitary-releasing hormones."

"The pituitary gland is called the master endocrine gland of the body because it controls the function of other endocrine organs. The anterior pituitary produces the hormones thyrotropin (thyroid-stimulating hormone [TSH]), corticotropin (adrenocorticotropic hormone [ACTH]), luteinizing hormone (LH), follicle-stimulating hormone (FSH), growth hormone (GH), and prolactin (PRL). The anterior pituitary is controlled by specific hypothalamic-releasing hormones. The posterior pituitary produces vasopressin (antidiuretic hormone [ADH]) and oxytocin."

http://emedicine.medscape.com/article/923789-overview

My article for The Mighty on my conditions related to Panhypopituitarism

​
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 Congenita​l​ 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 Source​s​:

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=95496​P​
--
Regards,
Vanessa Pike-Russell

Talipes resulting from Panhypoptiuitarism

I was born with Talipes Equinovarus, also known as Club Feet. This is a condition that stemmed from my primary condition of Panhypopituitarism  and Growth Hormone Insufficiency.  

So what is Talipes?

"In clubfoot, the tendons on the inside of the leg are shortened, the bones have an unusual shape, and the Achilles tendon is tightened." (1) 

A good image showing before and after treatment can be seen below:

Recently I was on Instagram and saw the image by @_kursti of a child wearing a 'boots and bar' apparatus similar to the one I had to straighten the toddler's feet into the correct position.  It didn't work so I underwent invasive surgery. 

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I remember feeling frustrated that I had to sit in the one position and it made it difficult to move around. My mum helped me by teaching me how to read by the age of 2 and I always had a book handy to take my mind off things. I am now sitting in one position for up to 18 hrs a day with my website and social media marketing company.

When the boots and bar and manipulations obviously were not working, the Orthopaedic Surgeon cut my tendons, lengthened the inside of the foot tendon and shortened the outside of the foot, in both feet. It didn't work very well and I kept tripping over as my toes would turn inwards. 

I am grateful for the lessons of tolerance and patience that it taught me. I had some amazing people in my life that went out of their way to increase my quality of life and extend upon my skills and talents. Today I wear Colorado boots which help to lock my weak ankles and allow me to walk up to 3km on level ground. I still experience pain and discomfort on a daily basis with poor circulation after my first operation where they cut my tendons and tried to make my feet turn outwards.

When I was 9 I had another operation, this time they broke some bones in my feet and chiseled bones then added a surgical staple in my calcanae which is still in operation today. It caused juvenile arthritis and cold weather made it worse. 

I know it was hard for my mother but she persisted with my physical therapy and despite doctors advice that I wouldn't walk until the age of three, she would strengthen my leg muscles and hold me up against the wall and build up my muscle until I not only walked developed calf muscles which was again contrary to doctor's opinion. 

My mum was determined that I would walk and I can never thank her enough for the fierce determination she showed as a mother of a baby with talipes equinovarus. I am grateful for that her every day.

Below is a photo of my feet, taken when I was at the Podiatrist's. 

In the photos you can see that I walk over my heel as it is malformed. I was supposed to have a heel operation in my late teens but since I was studying my degree I didn't want to take time off. I'm now 45 and suffer from weak ankles and jarring when I walk over my heel when not wearing Colorado boots done up tightly to lock the heel. They are very constrictive but I am so thankful for them. Most people don't notice my talipes. Some notice that one hip is higher than the other, though and my gait is a little lopsided. I am able to walk up to 3km on a good health day, which is amazing. I can't jump or run or hop or enjoy a trampolene but compared to what I was like when I was born and a toddler I am so thankful to my Orthopaedic Surgeons for what they did for me.

My Talipes Equinovarus (Club feet) Journey

@_kursti posted a photo of #bootsandbar apparatus similar to the one I used to wear on my #feet which helps to correct #talipes or #clubfeet

As I was a toddler and there was no photos taken of me in them, I can only go on how they were described to me.

"The #orthosis is two open-toed leather boots connected by a metal bar. The Boots and Bar orthosis is also called a #footabductionbrace orthosis or a #DenisBrownesplint The brace holds the child’s feet turned outwards and in the corrected position. "

I remember feeling #frustrated that I had to sit in the one position and it made it difficult to move around. My mum helped me by teaching me how to read by the age of 2 and I always had a #book handy to take my mind off things. I am now sitting in one position for up to 18 hrs a day with my #website and #socialmedia #marketing company.

I am #grateful for the lessons of tolerance and patience that it taught me. I had some amazing people in my life that went out of their way to increase my quality of life and extend upon my skills and talents.

I know it was hard for my mother but she persisted with my #physicaltherapy and despite doctors advice that I wouldn't walk until the age of three, she would strengthen my leg muscles.

She would hold me up against the wall and build up the #muscle strength in my feet and legs until I not only walked developed #calfmuscles which was again contrary to doctor's opinion.

My mum was determined that I would walk and I can never thank her enough for the #fierce #determination she showed as a #mother of a #babywith #talipesequinovarus

I still experience #pain and #discomfort on a daily basis with poor circulation after my first #operation where they cut my #tendons and tried to make my feet turn outwards. It didn't work and means that I get #pinsandneedles on a regular basis.

I feel blessed that the #orthopaedic doctors and #orthapedicsurgeryspecialists met for a convention when I was 9. My mum and I had travelled up from #wollongong to the #sydneychildrenshospital and I was presented to a group of surgeons who specialised in talipes correction. After examining me they said that there was a new operation which I would be a good candidate for.

In this ground breaking surgery they broke some bones in my feet, chiseled bones and then re-set them and added a surgical staple in my #calcanae which is still in operation today.

The breaking and chiseling of bones caused #juvenilearthritis and cold #weather made it worse. I remember that I did a lot of crying through the night with pain that was crippling and my heart goes out to people like my husband who lives with the pain and aches of arthritis on a daily basis.

Today I wear #colorado #boots which help to lock my #weakankles and allow me to walk up to 3km on level ground. I wear them almost every day and they provide support but are heavy and very constrictive and make my feet ache. I prefer aching, constricted feet to the alternate of walking over my malformed heel and twisting my ankle and not being able to walk at all.

Thanks to my mothers determination that I would have a good education I #graduated from university of wollongong with a degree in #Education with a specialisation in #informationtechnology and #communication which I am forever #thankful for.

I was a casual/ substitute teacher in primary school ( Years K-6 ) until I moved to Tasmania with the death of my father in law. It was mandatory that casual teachers must supervise yard duty at recess and lunch time plus sport where I stood on uneven ground which caused great pain and sometimes I couldn't walk without yelping in pain.

In my degree ( B.Ed) I had excelled at Website Design and Development and whilst living in Tasmania 2000-2002 I focused on creating a collaborative group work project called The Crab Street Journal, a web based magazine for Land Hermit Crab owners. There were over 2000 people in the Land Hermit Crab Owners Society and a group of us published the magazine which is still in operation today.

It made me feel productive and fulfilled and I decided that since I could work around my Panhypopituitarism ( PHP) which in simple terms is Pituitary Disease. I could work my own hours and live a creative, fulfilling life.
I love my job as Website Developer and Social Media Specialist. I still use my Education degree when I train my adult clients and whilst I miss teaching children I am glad that I made the decision to chose to retire from teaching in primary schools that were not sensitive to my physical issues due to talipes and health issues with PHP.

I love my life and feel that my adversity had made me the strong, resilient and compassionate person that I am today