Photograph of Valenee

Hi! My name is Valenee, I am 36 years old and I am a Primary School Teacher. I am British and live in London, UK. My parents are Indo-Caribbean from Trinidad and Tobago.

I love cooking, traveling, meeting new people and socializing with my family and friends.

I was diagnosed with HIBM (GNE Myopathy) in 2010.

Prior to my diagnosis and up until my mid 20’s, I was a very active flexible person; I especially enjoyed dancing (still do) played sports, long walks and playing the piano – back then, it was all very easy and effortless.
Leading up to my diagnosis I was experiencing weakness in my ankles, often tripping over, having to lift my legs in and out of cars, not being able to run and having difficulty walking up stairs.

It took a while to get the ball rolling to identify the unexplainable weakness that was happening in my body without having any pain, signs and symptoms of other medical conditions.

The results of my diagnosis came after I had a genetic blood test and an excruciating muscle biopsy taken from my thigh muscle (it looked like pieces of chicken on a petri dish, I’m surprised I didn’t faint), which was sent to Germany for testing and an MRI scan. Testing for GNEM has changed to a simple blood test now, thank goodness!

My consultant told me I had a rare muscle wasting condition called ‘HIBM’ and at the time, there was no cure or medication for my newly diagnosed condition. The day I received my results I was looking forward to finally getting to the bottom of this unexplainable weakness I had been experiencing. My first question to my consultant was “How long do I have until I’m in a wheelchair?” Her response was that she couldn’t tell me that information as it’s taken 26 years for me to have got to this stage of the condition and then went on to explain the genetic nature of this condition in more depth. She specifically advised me that research on my newly diagnosed condition wasn’t all reliable as it was still in its infancy stage and there hadn’t been enough research, so it could be upsetting to read.  Me being me, curious and inquisitive, when someone tells me not to look, I’m going to look. So, I went home and Googled ‘HIBM’.

What I researched was distressing, however I thought to myself if I was born with this condition, then this is meant to be my path in life. I have always been a strong believer that no matter how hard, sad, disappointing, scary or traumatic life can be, there is always someone, unfortunately suffering in a worse situation.

I am so blessed to have such supportive family and friends around me. I live on my own and I still maintain my independence in many ways. I wear orthopedic foot supports to aid my walking and I do rely on the support of another person to link my arm for outdoor social activities. I have weakness in my hands, so I am unable to play the piano like I did before, and my grip is very weak. I do need to remember not to use my teeth to open things or I’ll end up with false teeth! ! My car is adapted so I can drive confidently and safely, which I love to do and within reason, blast my music.

This condition is so frustrating as my mind works faster than my body, however along the way of my journey, I have learned the value of patience and resilience. I shall  continue to give my all, challenge my limits and make the best out of a bad situation. It’s important to remember what we have rather than what we don’t have.
I have very supportive employers who understand my needs and has made me feel safe and comfortable in my working environment.

In 2018, it was an amazingly unforgettable experience to meet others with the same condition as me at a GNEM Symposium in Manchester, UK. It bought me great joy to have the opportunity to discuss and be able to identify with other people who has the same condition as me. Everyone I met had their own unique story; – they were wonderful and we have stayed in touch since like a life-line to each other.

I am excited to meet more people with GNEM and make lifelong friends where we can share our journeys, exchange ideas, learn from one another and raise awareness.

Every day is extremely challenging for me in so many ways I never imagined for myself at this stage of my life. apart from being able to tolerate a high level of spice in my food. I don’t think anything can stop me from eating spicy food. Nevertheless, I have found more creative ways of adapting, e.g. befriending bouncers who have kindly offered to carry me upstairs in venues that aren’t accessible. I persevere and find a way to get myself where I need to be.

As a fellow GNEM-er once told me, ‘We still have full use of our mouth and brain”, which has proven more useful than the use of limbs in certain scenarios!
It’s important to remember that we can live a “normal” life like everyone else.

I have come to realize that some people’s disability is their mindset.. Where there is a will, there is a way.

Thank you for taking the time to read my story.