D I A G N O S I S

I can’t believe what I’m about to share with all of you. I never imagined writing about this or even getting to tell my closest friends and family. After 6 LONG years, I finally have a diagnosis!!!

Last Monday, 17 July, Mum got a call from the Infectious Diseases clinic at the Alfred Hospital. He told mum that he had just got results back from Thailand and my blood had tested positive for Gnathostomiasis!! (It’s hard to spell and even harder to say!) He is a really busy man but created an appointment for us on Friday 21 July, I’ve got to say that that week seemed to go forever!

So, what’s Gnathostomiasis? It’s basically a very rare disease caused by a parasite. You usually catch it in South East Asia, mostly in Japan, Thailand and China. You can get it by eating an infected fish that either isn’t cooked (sushi) or fish that hasn’t been cooked enough. So, we can now trace the infection back to either our visit to Hong Kong and Japan in January 2010 or our visit to Fiji in June 2011. Back then, I didn’t eat sushi so I now know it was because the fish hadn’t been cooked well enough.

The disease has different symptoms in different people, depending on where the parasite (about 4mm long) travels within your body after you digest it. For some lucky people, the parasite can be seen just under the skin so the diagnosis is easy and the parasite can be cut out. For others like me though, it travels around the body undetected causing symptoms that doctors try to treat not knowing the reason! The parasite travels around the body using its teeth and these teeth damage everything that it moves past.

So, what does this mean for me? We’re not exactly sure. On Friday, I commenced medication to kill the parasite. This will take a couple of weeks and whilst its dying, I’ve been warned that my symptoms might get worse and it may take a couple of attempts to kill it. Only then will I get an idea of whether my pain might lessen. The doctor told me that there have only been 50 people diagnosed with Gnathostamiasis at The Alfred in the last 20 years. Once the parasite was killed in other patients, some had their health improve immediately whilst others took a number of years.

So my thought is that at least we have taken the first steps to recovery – diagnosis and trying to kill this thing!

Dr Fuller had taken blood tests in November last year and tested for a number of different diseases that he thought I might have. We met him again in February and he told us that they had all come back negative.

Although its taken so long to get to where I am today, I do not want to stop here. As more and more people are travelling overseas to South East Asian countries for holidays, more and more people are contracting the disease. I ultimately want to create awareness as I suffered for so long in indescribable pain that I would not wish on my worst enemy.

For now I am focusing on getting better, and preparing myself for my pain to get a lot worse. I am however looking towards the future, I have a big family holiday planned in December to look forward to.

I want to especially thank the few doctors who believed in me and didn’t believe ‘it was in my head’ and especially to my family who continued to fight for doctors to understand as well as giving up parts of their lives to care for me.

Carly x

If you are wanting to learn more about this disease, a link is attached below:

https://www.cdc.gov/parasites/gnathostoma/