Saturday, 6 July 2019

A Guest Blog with VHL - Diary of a Genetic Defect

I recently found a blog by Chloe, a mother who had two hemangioblastoma's in her cerebellum and the subsequent surgery to remove them. She unfortunately also has the genetic condition VHL,which means she is liable to more tumours throughout her body and needs frequent monitoring.
Many of her posts resonate strongly, those feelings that only someone who has survived similar can understand... 

With her permission I have copied a post from her blog:

An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.

Saturday, November 28, 2015

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.

I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.

But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.


feeling sick

no appetite


balance off

arm tingly (left)

eye feel odd

general weakness


and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.

Count your blessings...

I'm trying to.

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