For years I have never bothered whenever I heard of the term ‘autoimmune’ until recently I was diagnosed with one. In layman’s term, autoimmune is a disorder where the body produces autoantibodies due to its inability to recognize which of the body parts (cells/tissues/organs) is its own, causing inflammation and damage to the area or organ concerned. SLE, Lupus, Rheumatoid Arthritis and Diabetes Mellitus type 1 are just some of the examples of autoimmune disorders. This article describes my journey, as an individual diagnosed with an autoimmune disorder so rare, that it happens to 1-5 individuals in every millions of a population, Pemphigus Vulgaris of the Oral Mucosa.
It started in January 2010. Being a health nut, I would get so excited whenever I go to the pharmacy (go figure J). The aisles of health supplements would entice me to purchase as many bottles as possible. I would read the numerous health magazines just to update myself and refresh my memory on various health issues. I led quite an active lifestyle through yoga, jogging and dance. The types of supplements I would always be on the lookout for are the ones that promise to boost my immune system. But then again, life is so full of irony; little did I know that when I popped that tablet of the ‘complete’ and ‘the only’ health supplement I will ever need in my mouth; I triggered a reaction in my body causing it to produce autoantibodies (please note that I could find no literature to confirm this statement as no one really knows how the disorder is triggered. In my case, my disorder developed after I took the health supplement. This is a possibility as it was the only new addition to my diet back then.)
It started with a simple sore throat, which refuses to go away for two weeks. I went to see my GP for treatment and was given some lozenges and antibiotics. Seeing no improvements after a few days, I went to another GP for a second opinion, and was given the same thing. A week later, I started having white patches inside my mouth, spreading rapidly like there is no tomorrow. I requested my case to be referred to a specialist and was sent to a private hospital. Unfortunately, the ENT refuses to take my case seriously and waved it off as a stress-induced ulcer and gave me lozenges and antibiotics; though I have already informed him that none of them worked! At the same time, it was getting harder and harder for me to consume solid food. I was reduced to eating bread, dipped in clear soup and brushing my teeth would lead to excruciating pain. I took the ENT’s meds for a day when my best friend, Mimi insisted that I seek a second opinion.
Off I went to another private hospital, hoping to find an ENT who would examine my condition carefully. The ENT read the referral letter and peered into my mouth to see the seriousness of the condition. He said it was a serious case of a yeast infection, named Candida. Confidently, he gave me a dose of yellow liquid, which surprise..surprise..I happen to be one of the few people in the world to be allergic to it. The ENT did the cotton swab test on me twice to identify the culprit for the white patches and found it to be negative for fungus and bacteria. Though he was puzzled, he assured me that he would help me solve the puzzle. Through him, however, I learned that the infection reacted positively towards prednisolone, a type of Corticosteroid, used to control inflammation. This development gave him the idea to refer me to a dermatologist.
The dermatologist I was introduced to wanted me to undergo a biopsy. Where a sample of cells from my inner mouth was cut to be delivered fresh and analysed by the lab. Apparently, that is one of the best ways to confirm an autoimmune disorder. A few days passed, and I have lost five kilograms due to the lack of sustenance. At this stage, I could no longer brush my teeth. I rinsed my mouth with a mouth wash available in any stores and I could only drink plain water and milk. Even these were difficult to swallow. I reported the pain to the dermatologist and he gave me Diflam, a type of mouth wash which numbs the pain temporarily. He said the one I was using is too strong for my fragile gums and palate. A simple gentle scrape using a tissue would lead to bleeding gums and using the wrong mouth wash, or eating crispy food would only make matters worse. Finally, one morning, I received a phone call from my doctor, who informed me that I was diagnosed with Pemphigus Vulgaris of the Oral Mucosa, a rare autoimmune disorder which is more prone to occur among women between 40 – 60 years old (by the way, I am in my thirties), and those of Ashkenazi Jewish descents or of Mediterranean origin.
Unfortunately, the news is only the beginning of my long battle with the autoimmune disorder. As I learned the hard way that there is no cure for it and I have to live the rest of my life being dependent on steroids and azathioprine. To find out more about this disorder from the horse’s mouth (that would be me), do wait for my updates from time to time.
XOXO
Ms. Invictus
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