My name is Hayley and I am 17 years old. I have B6 non-responsive homocystinuria, which means I am constantly taking medication and must maintain a low-protein diet. Although this can be difficult at times, I am alive and well. Having HCU has not stopped me from doing many of the things that other 17 year olds are able to do. These have included, getting my probationary license, getting excellent grades at school and travelling overseas to America.
Being diagnosed with HCU can be a challenging time, however, I wanted to let others know that no matter your situation, you can always make it better.
My journey with HCU has not always been easy, and there have been times where I have wanted to give up. In 2014, I was admitted to hospital for 2 weeks due to having high levels which caused me to be at a high risk of stroke. During my time in hospital, I struggled as I found it affected my school life, my friendships and my mental health. I call this stage in my life ‘black dog’, because it was a very dark time as I thought I was alone in a dark hole and could not see myself getting out. After participating in therapy and having someone to talk to, I overcame this rough period that many of us will experience at one point in our life.
Although I understood I was surrounded by family and friends who loved and supported me, not everyone really knew what I was going through. Between the ages 13-15, I struggled with finding out who I was and at the same time I was trying to take more responsibility of my disease and become more independent. I found myself in the ‘black dog’ period once again as I was struggling to juggle more responsibility and finding my place in the world.
I urge anyone who is experiencing a rough period in life to surround yourself with your loved ones and even go try something extreme like skydiving! Skydiving can be a hard challenge, but I took my time and once I did it, there was such a relief and the experience allowed me to move forward.
One of my favourite sayings is, ‘Live life to the fullest and don’t waste time wishing it wasn’t you, because this time could be spent enjoying the time you do have on earth’.
Throughout my life I have had doctors and people say they know how I feel, unfortunately they don’t and they most likely never will. Having a network of people who know and understand your thoughts and feelings is so important and I hope to find new friends through the HCU Network.