Personal Struggles

Wegener’s Granulomatosis: The Enemy within That is Difficult to Defeat

Photo Credit: Michał Parzuchowski

Have you ever played the block stacking / block crashing game called Jenga? It’s the game where wooden blocks are stacked on each other to make a tower. Each player has to pull-out a block and put it on top. It’s all about balance and control.

I can still remember having to steady my jittery hands, nervously removing each block as gentle as I could to prevent crashing the whole tower. No one wanted to be the ONE to crash it, but eventually, it will still crash. After all, that’s the fun part of the game. Am I right?

However, if a tower crashes in real life, it’s NOT fun anymore.  🙁

Having an autoimmune disorder is just like playing a Jenga game. My body is like the tower and it’s susceptible to attacks by my own immune system. A healthy immune system like yours can differentiate the good and the bad. You catch a cold, your immune system sees a virus and attacks it. End of story. For my case, it’s not that simple. My immune system is confused with what to attack. And it may end up attacking my own healthy cells.

In a Jenga game, it’s like pulling a block from the tower. If you pull the wrong one, it may send tremors to the whole structure and potentially crashing it! In a human’s body, the immune system attacks its own healthy cells and causes irreversible damage to the body.

To many people, it may not look as bad as it sounds. Most people suffering from autoimmune disorder do not look sick – just like myself. The disease hides in our bodies and it happens over months or even years. So the effects aren’t always noticeable. Plus, it’s not easily diagnosed.

I have a rare, incurable autoimmune disorder called Wegener’s granulomatosis, which inflames the walls of the blood vessels, depriving the organs of blood and leading to the destruction of tissue and cartilage (in my case, my sinuses, lungs and kidneys). There is NO CURE to it. So doctors treat it like cancer, with a combination of steroids and chemotherapy, hoping to force the disease into a long-lasting remission.

I ever asked my rheumatologist on how frequent he sees a new patient with Wegener’s. And his answer was one new patient in a year! That’s very rare considering that he’s a reputable rheumatologist who sees thousands of new patients every year.

And because it’s SO rare, there’s a limited opportunity to run large or multiple clinical studies. Therefore, the treatment choices are often limited. The support group is almost non-existence too. So these are the real challenges in battling a rare and incurable disease.

My Wegener’s debuted in 2012, when I was 35. I had a sinus infection that wouldn’t go away. Suddenly, a polyp (abnormal growth of tissue) – the size of a red bean, popped up in my nose. An ENT specialist removed it and biopsied it. It was non-cancerous but traces of Wegener’s were still not found in my first biopsy.

Several months later, I had frequent nose bleeds so I went to see another ENT specialist. Another biopsy was carried out, followed by a full blood test. It was then revealed that I had Wegener’s. Luckily, it was detected in the early stage with no lung or kidney involvement yet. Not to scare you, but up to 90% of untreated Wegener’s patients die within 2 years – usually from respiratory or renal failure.

Why is it called Wegener’s? In case you wonder, here’s a short explanation. The term “Wegener’s granulomatosis” was introduced to the English language medical literature in 1954 to honour Dr. Friedrich Wegener, a German pathologist who was an early describer of the disease. Today, this disease is also known as Granulomatosis with polyangiitis (GPA).

Okay, enough of medical terms. I know.

My rheumatologist started me on steroid prednisone and a chemo drug called cyclophosphamide, which basically kept symptoms of the disease at bay. As I’ve mentioned above, this disease has no permanent cure. Medications and treatments will only suppress the immune system, preventing it from attacking healthy cells.

By doing so, it also decreases the body’s ability to fight invaders, causing vulnerability to infections. Therefore, I had sinus infections from time to time, but nothing so severe that stopped me from working and living my life normally.

But one thing for sure. With these medications, I had to kiss goodbye to fertility because they will cause birth defects. Poor Edison will never have a sibling. Four years ago, I also suffered from early menopause. I only have the courage to talk about it now. Not that it’s shameful to have menopause, but I think it’s just too personal. Now that I’m over it, I dare to talk about it.

In 2013, my menstrual period stopped suddenly. I cried and cried, not believing that such thing could ever happen to me. I went for hormone replacement therapy for two years, thankfully, I managed to recover from it. Not that I planned to become fertile again, but suffering from menopausal symptoms is no joke. The hot flashes, night sweats, weight gain and mood changes literally made my life a living hell.

Four years ago, I made a birthday wish that Wegener’s will go away by the time I hit 40. This year, I’m 40 and I’m still suffering from it. Five years have passed in a blink of an eye, but there’s still NO sign of a complete remission. Even though it has been a long and tiring journey, I’m glad that I don’t have a serious flare that stopped me from working and taking care of my family.

The truth is, I’ve long accepted the fate that I’ll live the rest of my life popping pills. For a record, these are the survival pills I took every day. The picture below showed the amount I take every morning. I take the same amount at night (except the white ones). On top of this, I have to take a wide range of supplements to reduce the side effects of my medications. Hence, I take calcium and iron supplements every day.

The amount of pills I take every day can reach up to 20!

As of this writing, I’m still well. Even though my Jenga tower is not fully stable, I’m doing my best to prevent it in falling. In Jenga, you can always scoop it up, rebuild and start all over again. But in life … falling means end of life.

No one knows what tomorrow will bring. But today, I’ll live my life to the fullest and make beautiful memories with my family while I still can.

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Amanda October 9, 2017 at 7:49 PM

It’s never easy battling such a disease and taking care of your family at the same time. You’ve balanced it all well. Wish you a speedy recovery and take care.

Mag October 11, 2017 at 10:51 AM

Get well soon, Emily. God bless!

Deborah November 16, 2017 at 8:35 PM

Hi Emily, thanks for sharing your story. It takes a lot of courage to do so. I liked how you used the jenga tower as an example. I too have an auto immune condition that is incurable as well. It’s called anti-Nmda receptor encephalitis. I’m lucky mine was considered a minor case and am remission too. I don’t have any support group here in sg either so I am thankful for the general FB auto immune Grp.
I wish you all the better health and happiness life can give you and your family. God bless (:

Emily November 20, 2017 at 10:08 PM

Dear Deborah,
Thank you so much for your kind words and concern, I really appreciate it. Yes, I took a lot of courage to share this. Some of the things can be rather personal, but I’ve decided to open up and share on this blog. Hopefully I can connect with someone who’s having the same rare condition as me. I’m glad that you’re into remission already. Take care. *hugs*

Sheryl Chan November 17, 2017 at 12:26 AM

Thanks for sharing and raising awareness on this rare disease…it’s the first time I’ve heard of it myself ? Hope to spread the word about it and learn more about it from you. Sending good thoughts!

Emily November 20, 2017 at 10:04 PM

Dear Sheryl,
Thanks for visiting my blog and I enjoy reading yours too! 🙂 One of the reasons of sharing about my disease is to create awareness. I’m glad I did, else I won’t be in our Facebook support group now. Let’s fight this together and together, we will be much stronger. 🙂

Sharon April 21, 2019 at 5:38 PM

Hi Emily, is your condition stable already? I also suspect that i have auto-immune disorder, just need more tests now to confirm…

Is A/Prof Leong Keng Hong still your rheumatologist now? How do you find Prof Leong or you have other to recommend who is caring to their patients? thanks..

Emily April 22, 2019 at 8:18 AM

Hi Sharon,
My condition is stable now but I’m still on medication. Thanks for your concern. A/Prof Leong is a very caring, kind and experienced rheumatologist. However, I’ve switched to public hospital ~2 years ago to reduce my medication cost. I’m currently seeing Dr Annie Law of SGH Department of Rheumatology and Immunology.


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