It was the winter of 2009, I noticed two spots had appeared on my thigh & I wondered if I had been bitten by something. About a month later I was attending a function out of town for work which involved dinner & a night of dancing. I woke the next morning to find a rash all over my feet & ankles. I thought it was either an allergic reaction or I’d been bitten by bed bugs. My doctor wasn’t sure what had caused it but thought it would be a good idea anyway if I saw a liver specialist at a large hospital in Sydney as I had been diagnosed with Hepatitis C in 1992 which I contracted in the 80’s. I hadn’t really had any symptoms up until that point but off I travelled to the big city which was 5 hours from the rural town I lived in. When I saw the specialist he believed I had vasculitis that was associated with the Hep C. He ran some blood tests which came back positive for cryoglobulins.
So that was the start of my journey with cryoglobulinemia. I now know the rash I had is known as purpura & has been with me for over 5 years. It can become quite bad at times, to the point of forming lesions, which can be very painful especially when it is concentrated around my feet & ankles. I’ve had times where all I could do was recline with my feet elevated on pillows & have had to crawl to go to the bathroom. The rash can spread over most of my body however it is normally worse on the legs & feet. Over the years I’ve developed other persistent symptoms such as joint & muscle aches which at their worst can feel as if I have a strained muscle. My nerves have also been affected, I suffer from numbness, tingling, burning in my hands, feet & legs. I have an enlarged spleen & in 2014 it was discovered that my kidney’s had been affected. As a result I am anaemic & my blood pressure is high. It feels as though my body is slowly falling apart. Whilst my symptoms are fairly classic for hcv related cryo I am quite different to many other cryo sufferers in that my flares seem to be worse during warm & hot weather rather than the cold.
Living with cryo hasn’t been easy. I still work part time& am lucky to work in an office where I can stay off my feet during a flare. It is still a struggle though going to work, cooking meals & running a household as well as travelling 5 hours to my specialist appointments. I have had to spend a lot of time indoors out of the warm weather resting. Despite all the hardships I have tried to make the most of a not so good situation & live life as best as I can. I love going to watch my youngest son play football & visiting my oldest son when I travel to my appointments. I also enjoy catching up with family members & going to concerts when I can. I even went on a 14 day cruise one year which was only possible because I took a mobility scooter along with me to get around.
I am very fortunate to have met some wonderful people through the cryo support group I belong to. Without their support it would be a lot more difficult to cope with this disease. I am hoping that 2015 will be a positive year as I have now started treatment for Hepatitis C with two new medications. It is hoped that if the hcv is cleared the cryo will dissipate or at least the symptoms will be greatly reduced.