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When STEROID is life!!!!!! And sustains MY life!!!!

By Victoria Kopczak

Hi, my name is Victoria and I’m 43 this year. I first realised I may be chronically ill when I was 37 weeks pregnant and got HELLP Syndrome. This derives from an ‘underlying auto immune’ condition but little did I know that myself and my first child (Harvey who is 12 this year) we’re lucky to be alive because my immune system had attacked my pregnancy and also my pituitary gland. I went onto have my daughter 4 years later (Poppy who is 8) and this pregnancy was even more dangerous. Realising something really is terribly wrong I was diagnosed with ‘Isolated’ ACTH deficiency and I have relatively little pituitary tissue left. I am now classed as having secondary adrenal insufficiency. The diagnosis was a slow, pain staking process & took time, many tests and tears of confusion.

Thereafter, I found employment and juggling motherhood very hard with my illness, however I was, and am, so incredibly lucky that my husband of 13 years was financially able to support the family with his wage as a professional rugby league player. My career in criminal defence will one day resume and I will feel happy that my degree, masters degree and legal credentials will not be wasted due to my ill health.

Life really did take time to adjust to a new me, steroid tablets at 9am, midday and 5pm didn’t seem to help and therefore, I was very lucky to have the finances available to become a self funded Medtronic insulin pump owner. Why everyone with adrenal insufficiency doesn’t have the option of wearing a pump on the NHS, I’ll never know. Why do rare diseases get so little funding or the understanding they deserve????

That rant is for another day….

My existence is good! 8 years on from diagnosis and 4 years into being on a steroid pump! I can now exercise 4 times a week, I’m a busy wife, mum, and friend and do have a very good quality of life considering I live with an illness which is regarded as ‘life threatening’. No one understands adrenal insufficiency….even medics don’t appear to even want to begin to understand it. It scares them. This can be very daunting when admitted into hospital for an adrenal crisis. The end result could be death so it’s at the forefront of my mind 24/7 to live clean, keep healthy and never stop fighting.

I often hear “but Victoria, you look so healthy”! If only people knew! Invisible illnesses are often hard to comprehend but only serve to strengthen one of my favourite quotes “be kind! For everyone you meet may be facing a battle you know nothing about”. When I have low days I always realise there is someone worse off than me and I think about my husband and 2 children and what a happy family we are. I won’t lie when I say it’s a bitter pill to swallow knowing you won’t ever get better.

One motto I try to live by is to have as little stress, drama and upset in my life as possible. This has meant I’ve had to say goodbye to people I initially saw as ‘friends’ as it soon became apparent they weren’t due to drama, upset/ unrest and generally things anyone without their own cortisol simply cannot handle. I’ve had to reassess my boundaries and really make sure I try to live as peaceful and as happy a life as possible. I have my fair share of mental health struggles, namely anxiety. It’s often hard to explain to people that cortisol (which I get from my pump) is what the body secretes when someone is sad, angry, upset, afraid or poorly. You need cortisol to stay alive as every organ depends on it.

Irrespective of my health battle, my mantra in life is to tackle anything head on which is put in my way because effectively, I realise I’m so lucky to be alive. I have a great medical team behind me. A shout out to the endocrinologists who work with any steroid dependent patients. To sum up……you only have one chance in life so live it!

Of late we have had our son Harvey who has been found to have very low cortisol levels….adrenal insufficiency is so hard to understand and, to explain and who even knew auto immune illnesses were familial? Well we do now. It’s been hard to accept but I will be his perfect mentor, guide, carer and most importantly the mum who will help him navigate his way through life just like I do. With a smile on my face!


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