Taking part in a clinical trial changed my life
I was only 32 when I found out I had a genetic form of emphysema. The news was devastating – I had two young teenagers to look after, I couldn’t afford to be sick!
Ten years ago, while traveling back from Adelaide, I became very sick on the plane – it all happened so quickly. It felt like I really needed to burp, but couldn’t. The pain was excruciating.
When the plane landed, my partner rushed me to St John of God Murdoch Hospital, where I was taken into emergency. This is when I had a visit from Dr Peter Bremner, who told me I was very sick.
I was diagnosed with alpha-1 antitrypsin deficiency (alpha-1), an inherited genetic condition where a person has low blood levels of a protein known as the alpha-1 antitrypsin protease. Alpha-1 causes an increased risk of chronic obstructive pulmonary disease (COPD) in the form of emphysema.
My lung capacity is only a third of someone who is healthy, so each day is determined by my health. Even the weather can affect how I feel and what I can do, especially during the fire season. I’m also very susceptible to respiratory infections.
Being active, even just walking up a slight slope or mucking around with my kids became a thing of the past. I often have to stand at the kitchen bench for 15 minutes at a time before I can get my breath back. I now need to allow extra time to do everything.
That is why I want to advocate for medical research. Finding a cure for alpha-1 is incredibly important. Even if it’s not possible for me, hopefully it will for future generations. There only needs to be one ‘Aha!’ moment, that could change someone’s life.
Thankfully, my Specialist suggested I take part in a new study with the Institute’s Clinical Trials Unit. I have been on the trial for 26 weeks now and some days I feel great – really great! The trial is a result of decades of research and I am hoping it will change my life.
Life is a journey and since my diagnosis, I have wanted to share special moments with people. I recently completed a Certificate IV in Celebrancy and have my first wedding in February with 8 more booked throughout 2017. Weddings are such a joyful, happy time, and are one of the most important days in someone’s life. I’m looking forward to being a part of that.
Alyssa, supporter of the Institute for Respiratory Health