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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