04/06/2024
One of the hardest things I’ve ever had to write and definitely not the post I thought I’d be writing at the start of this year but here we go.
I have been diagnosed with Tarlov Cyst Disease an incredibly rare and in some cases very destructive disease. Very few people worldwide suffer with this disease and of those few less than one percent of sufferers have symptoms. Unfortunately I’m one of the few that not only have the disease but also suffer quite significantly.
To explain a little in very basic terms; a nerve within the spine fills with spinal fluid and balloons slightly into a “cyst” usually around 1 to 2cm in size.
I have 5 of these with one being so big it’s filled my pelvic area so as you can imagine it’s very large.
Knowledge of the disease within the NHS is exceptionally poor. The reality is it’s so rare and complex that there is no desire for them to know.
Only 3 specialists worldwide exist though fortunately one of whom are in London.
It’s been very rapid in its arrival and destruction. My ability to carry out any sense of a normal life at the moment is severely hindered and is only set to get worse. It’s a soul destroying disease that quite honestly is taking away everything I love including my work.
The pathway back to a normal life is neither clear nor straightforward and unfortunately doesn’t cure you. But for any of you that know me really well will know that I am a very determined person and will do anything to get back to the person I was even if it’s only for a short time.
I would just like to take this opportunity to thank everyone that has supported my business over the last few years. I have appreciated every single order and was so grateful to the support that allowed me to do something I loved each day.
Your support was so very much appreciated and from the bottom of my heart thank you so very, very much ❤️
Louise xx
