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autoimmune disorder

Personal Struggles

Living with the Burden of Wegener’s Granulomatosis (Part 1)

How do you fight an illness that makes your own body destroy itself? This is my journal about living with a rare autoimmune disorder.

autoimmune-disorder-blood-testThe long list of blood test I just had at SGH

Seeing Life Differently Now

It’s been more than a year since I last talked about my autoimmune disorder. If you’re wondering whether I’ve fully recovered from it, the answer is NO. For a Wegener’s granulomatosis patient, chances for a complete recovery is very, very low. Unfortunately, Wegener’s is also a disease in which relapses frequently occur.

Therefore, I’m not hoping that I can ever fully recover, and I’ve resigned to fate that I’ll live with this disease for the rest of my life. =(

I was diagnosed with Wegener’s granulomatosis in year 2012. In Wegener’s, an abnormal type of circulating antibody called antineutrophil cytoplasmic antibodies (ANCAs) attacks small and medium-sized blood vessels. Injury to blood vessels affects several organs, including the lungs, kidneys and upper respiratory tract. If left untreated, there is a risk of kidney failure and death.

According to the Vasculitis Foundation, Kansas City, USA, this disease affects about 1 in 30,000 people. The cause is unknown, although it tends to strike between the ages of 30 and 50. The disease can damage vital organs and severely shorten one’s lifespan if the patient is diagnosed at the later stage of the disease.

I’m truly thankful that I was diagnosed early, before any lung or kidney involvement were detected. Since then, I’ve been seeing a private consultant rheumatologist at Gleneagles Hospital. I’ve been taking oral medication for the past 4 years, and my condition is under-control.

The main problem that I face now is frequent nose bleed, and it’s quite severe when I travel due to temperature and humidity. I’ve a very sensitive nose and whenever I sneeze hard, my nose will bleed. Sometimes, the bleeding is quite heavy and hard to stop.

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