Personal Struggles

Living with Autoimmune Disorder


Just a few minutes into my sleep, I sensed a mild smell of blood. Then, I felt a strange ‘liquid’ flowing from my nose into the back of my throat. I immediately woke up and ran to the toilet. I spit out the ‘liquid’. It was blood. Then, my nose started to bleed heavily. It took me almost ten minutes to stop the bleeding.

Well, that’s part and parcel of my life living with an autoimmune disorder. Nose bleeding has become a common affair to me.

I first heard of the term ‘autoimmune disorder’ about 12 years ago. At that time, my brother suffered a sudden and massive hair loss. He was still in his early twenties, so it’s definitely not male pattern hair loss. Later on, we realized that it was a kind of autoimmune disorder that manifests itself by attacking hair follicles.

Thankfully, he recovered with the right medication and his hair grew back normally again.

In August last year, I was diagnosed with Wegener’s Granulomatosis (WG) – a kind of autoimmune disorder. There was a flood of emotions when my rheumatologist broke the news to me. At first -okay, for a while – I was angry and disappointed. This is not the way I want to spend my thirties, after all.

To further explain WG in layman’s terms, it’s a rare disorder in which certain blood vessels become swollen and inflamed. The inflammation makes it hard for blood to flow. It affects the nose, lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppression.

Later on, I found a relief because I was detected early, and there was no lung and renal involvement yet. Still, this disease is chronic (there is no cure), and the effectiveness of treatment is unpredictable.

My first course of treatment started with prednisolone (50mg daily). It’s a steroid that prevents the release of substances in the body that can cause inflammation. I also took cyclophosphamide – it’s a drug that is used primarily for treating cancer, and also suppresses the immune system.

Prednisolone damaged my look, and I’ve been battling with weight gain issues since then. Cyclophosphamide, on the other hand, also caused undesirable side effects such as hair loss, early menopause, etc.

Four months ago when my hair loss became so severe, my rheumatologist decided to change my treatment. I was off cyclophosphamide immediately, and I started taking Myfortic – a new medicine that has been approved for the treatment of WG. There is no severe side effect for Myfortic, but it is VERY expensive.

I didn’t have a choice, though. Money can be earned back, but health is not. And I cannot live with no hair. So, I’ve decided to continue with this expensive treatment with hope that WG will go away soon. My health is my first priority now.

During these 1.5 years, I frequently experience emotional trauma. Feelings of low self-esteem, sadness, lost of hope, and even fear of dying young. I’m not scared of death, actually. But I’m most worried about my son if I had to leave the world in a sudden. Nonetheless, I tried my best not to let these negative feelings take control of my life.

This autoimmune disorder also makes me see things differently now. It’s a liberating experience to say the least. Every day when I wake up, I’m thankful to see the sun rise on another day of my life. To be with my family and loved ones for another day, I live every day like it will be my last.

Live, Love, and Cherish Life. Now and Always!


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Madeline November 7, 2013 at 4:50 PM

Jiayou Emily! =)

Emily November 11, 2013 at 8:39 AM

Hi Madeline,
Thanks. Yes, I will surely jia jia you!

MieVee @ November 9, 2013 at 6:04 PM

Take good care and all the very best! 🙂

Emily November 11, 2013 at 8:39 AM

Hi MieVee,
Thanks for your kind message! Will take good care of myself.

Paulyne November 11, 2013 at 11:27 PM

I am very encouraged by your sharing. You reminded me not to take our health for granted and to cherish our loved ones despite all the challenges we have to face in life. 🙂

Emily November 12, 2013 at 12:42 PM

Hi Paulyne,
Thanks for your kind comment. When I was in my twenties, I seldom fell sick and I took my health for granted. Now I realized the importance of it and I’m doing all I can to regain my health. Not just for myself, but for my family as well.

lily November 17, 2013 at 12:52 AM

I love to read your blog and draw strength from what you wrote. I am in a very bad situation and went into three surgery. I have a 6 year’s old. As what you said, I am too not afraid of dying if without my young child.

Emily November 17, 2013 at 8:54 AM

Dear Lily,
I’m so sorry to hear about your experience. I sincerely hope that you’ve recovered from your surgeries. What’s the diagnosis from your surgeries? If you don’t mind, we can communicate through e-mail and support each other.

When I was feeling down and discouraged, I always look at my son. I want to be him for as long as I can. Thus, it motivates me to recover faster and move on in a positive manner.


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