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.

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.

The frequent nose bleed is due to my deviated septum caused by the disease. A deviated (or misaligned) septum makes it difficult for air to pass through the nostrils and into the lungs. The curvature of the septum also creates turbulence as air passes through the nostril. The more turbulence on the septum, the drier it becomes, and that leads to a bloody nose.

I used to feel very depressed whenever I look at the mirror. I hate my nose. I had wanted to go for a cosmetic surgery to repair my nose. But nowadays, it doesn’t bother me as much as it used to be. I’m just glad that I’m still alive.

For patients who are still working like me, the burden created by the disease is much higher. I’ve to take routine blood test every three months to monitor the ANCA level, which is commonly elevated when the disease is active. I’ve to take time-off from work for my check-ups. Cost of medication is also quite high.

Recently, a close friend suggested that I should switch to a public hospital. With subsidies for specialist care in the public hospital, I can reduce my medical cost. I always have the impression that waiting time is very long at public hospital, and I dread going to polyclinic to get a referral letter.

Nonetheless, I decided to give it a try. Two weeks ago, I went to Hougang Polyclinic. I was pleasantly surprised that I could make an appointment online. I booked the last slot at 3:45pm and within two hours, I was done with my consultation, payment and referral letter. It was indeed faster than I’ve expected.

Two days later, I received an SMS from Singapore General Hospital with my first appointment at the Autoimmunity and Rheumatology Centre (ARC). My appointment was fixed on the following week. I couldn’t believe how fast it is, as I was expecting at least one month waiting time. And the best thing is, I can easily re-schedule and keep track of my appointments via Health Buddy mobile app!

My first consultation at Autoimmunity and Rheumatology Centre (ARC) was a pleasant one. I did a comprehensive blood test. Six syringes of blood were drawn for the test, and I was so exhausted after that. From specialist consultation at ARC to blood test at clinical laboratory and medicine collection at the pharmacy, the whole process took just 3 hours.

“Seeing life differently now”

I may have said this many times. This disease makes me see life differently now. I know that I should be thankful because I can still lead my life as normal as long as I take care of myself. Even though I need to take a bunch of pills every day, I work hard to not let this disease rule my life.

In addition, I reset my priorities in life. Health and happiness rank the highest to me now. I couldn’t care less about everything else. I don’t want to waste my time comparing and complaining, or make myself unhappy over trivial matters in life. To be with my loved ones for another day, I strive to make every day a meaningful and happy one.


Part of my aim in writing this series is to raise awareness about Wegener’s Granulomatosis. If you know someone who’re suffering from this disease, please help to spread the word. I want to reach out to them to share our trials and triumphs against this disease.

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Amy November 22, 2016 at 10:25 AM

Dear Emily,
Wish you a speedy recovery from your illness. Shall keep you in my prayers. I’m happy to hear that you’re dealing it with all your positive vibes. Take care yeah!

Emily November 28, 2016 at 9:45 PM

Dear Amy,
Thanks for your well wishes. Cheers!

Li Pheng November 24, 2016 at 9:01 AM

I’m so sorry you have to go thru this. I admire your writing on this blog. Just to let you know that there are some of us out here in this big big world who care about you, even if we’ve never met in person. Always give yourself a big pat on the back for all the things you’ve accomplished while enduring this disease. Take care of yourself and never give up.

Emily November 28, 2016 at 9:45 PM

Dear Li Pheng,
Thanks so much for your concern and kind comment. 🙂 Truly appreciate it.

Tony December 15, 2016 at 3:24 AM

My story is similar to yours. Same year too. I was severely sick for almost 6 months before fonding out and being treated with steroids. I had a lot of bleeding in the sinus to the point my hearing was almost lost. I was coughing up blood with was result of a leashion in it and I had big sores on my arms and hands that looked and felt very horrible. The lung healed, the sores on the flesh went away and the sinuses cleared From steroids after a year and then they put me on 20 mgs methotrexate once per week. Occasionally I feel like there’s some sore muscle fare ups and I’ll never be the same person again. I’m greatful to be alive but still struggle with this regularly. Good luck to you

Emily December 21, 2016 at 11:15 PM

Hi Tony,
I’m sorry to hear about your condition. And I hope that your condition is under control now. My biggest worry is lung involvement when I had a flare two years ago. Thankfully, the Rituximab treatment helped and my condition is stable for the past 1 year. Good luck to you too!

Marie January 1, 2017 at 6:47 PM

My brother in law has been diagnosed with this condition just before Christmas. He has no feeling in his left foot and his right hand, two toes may need to be amputated. He is in a great deal of pain and has lost a lot of weight. Right now he is being given steroids as well as a chemotherapy treatment. We hope that he will regain the use of his limbs and somehow get to a point that he lives a good life. He is very scared at the moment, we are worried for him as well, but we have to trust that he is receiving the best care possible as we wait to see what happens next. Thank you for sharing you story.

Emily January 2, 2017 at 10:22 AM

Hi Marie,
I’m so sorry to hear about your brother-in-law’s condition. It’s the first time I heard of amputation for WG patient. I googled about it and the results gave me fear. I’ll pray for his recovery and hopefully, he will respond well with his treatment. Take care.

Tini S Lolang September 26, 2017 at 4:41 PM

Hi Emily. I am Tini from Indonesia. My mom has been in ICU in Jakarta for almost 4 weeks now. The doctors just informed us recently that my mom has WG that attacked her lungs and kidneys. Today she received her 14th Hemodialysis .. our family is really looking forward to find the doctors and hospital who know how to manage her WG. Kindly advice us please.

Emily September 26, 2017 at 4:54 PM

Dear Tini,
I’m so sorry to hear about your mom’s condition. I’m seeing a rheumatologist in Singapore General Hospital (SGH), her name is Dr. Annie Law. The Autoimmunity & Rheumatology Centre (ARC) in SGH has specialists in various kinds of autoimmune disorder.

I sincerely wish your mom a speedy recovery. Take care!

Tini S Lolang September 29, 2017 at 9:39 AM

Thank you so much Emily. Will try to contact ARC, especially Dr Annie Law. I really appreciate your quick reply.


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