Hi! My name is Kate.

I was born with the vertebral (V), anorectal (A), and renal (R) letters of VACTERL Association. 

 

For the majority of my adult life until recently I would describe my life with VACTERL as 'being on my own', 'getting on with it' and 'doing my best'.

When you have been repeatedly told that your condition is 'rare' and 'complex' and you have had many negative experiences of health care, I believe that reinforces the sense that you're on your own and you have little choice but to get on with it.  

I  thought I managed the physical health aspects relatively well. My mum did this for me when I was a  child but then I took over, using medication, aids and adaptations. My symptoms and how I've managed them have luckily remained fairly stable in adulthood until recently.

I look back on my life and think I've had a good quality of life and I've met a lot of my goals in life despite my condition. 

 

However in 2022, I had some medical issues and appointments with medical professionals which led to a number of shocking realisations.

I realised that they didn't understand my condition and how to help me.

I didn't fully understand it, and I didn't feel listened to.

I also learned that my notes from early childhood were destroyed. I questioned what I previously thought about VACTERL and my life. I ultimately felt that my health, quality of life and my life in general was at risk. 

 

This fear caused me to turn to Google and read about my condition and I joined all (I believe!) of the Facebook groups.

I learned so much and connected with others for the first time in my life. I was no longer on my own.

The emotional and social impact of my VACTERL had never been addressed properly and now it was.

By connecting with others, I have friends and peers in my life who are the same as me, I feel I belong and that I'm included.

I also feel more confident and knowledgeable and that I can advocate for myself with medical professionals.

I became part of the VACTERL Visionaries as I want to ensure that everyone with VACTERL gets the support they need.