This is what Susan’s nominator said:
My mum is my pituitary hero because she has always been right by my side throughout my treatment. Being on cabergoline really affected my mental health and my cognitive ability so she fought my case to get me extra support in school. From paying for expensive hair products to prevent as much hair falling out as possible to researching scientific papers about how cabergoline affects cognitive function, she was always there as a shoulder to cry on, someone to celebrate with, someone to reassure me or someone to just listen. throughout my treatment I transitioned from paediatric services to adult services and it was a very rocky transition, which included the discovery that the tumour will probably be for life, and if I stop medication, I will probably have to go back on it at some point as it’s likely the tumour will grow back. My mum has always been right by my side to make sure that I am ok and as well as I can be – she is my pituitary hero 🧡
This is what Susan told us:
What’s your story?
My daughter Lucy was diagnosed with a Macro Prolactinoma when she was 15 years old in February 2019. She was started on the medication Cabergoline to reduce her tumour, just as we went into the first lockdown. During this time, she was struggling with studying at home, her medication made her feel nauseous, she was tired and her mood began to suffer. This was, however, blamed on Covid, as many teenagers were struggling. Investigating with the help of the pituitary foundation I was able to show the school how these brain tumours could cause brain fog, tiredness and lack of concentration. I was able to advocate for her to get her some extra support at school. It was not the effects of COVID, it was her prolactinoma that was causing her difficulties. It has taken Lucy time to come to terms with the way this tiny thing she calls “Brian” affects her and has changed her life plans, in making learning more difficult than it used to be.
Why you got involved?
I am overwhelmed that Lucy nominated me for this award. I have acted as any Mum would have when their child is upset and distressed by something. I have listened to lectures given by the Pituitary Foundation to try to understand the effects that this tumour has on her health. We look at ways to modify and make small changes, such as building in rest days, repetitive, chunked learning to pick up new skills, which will allow her to still do all the things that she wants to achieve in life. Thankfully she is now thriving in her new plans for her future.
What would you like to see happen in The Pituitary Foundation for next 30 years?
I would like the Pituitary Foundation to advocate for more research into the medication used to treat conditions, as there is not much of an evidence base at present on side effects, especially in under eighteens. I would also like to see it push for a greater understanding in the general population about the effects on day to day living that pituitary conditions can have on people.