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Living with UCTD & Relapsing Polychondritis - Jenny Koh

“Never give up. Even if you feel defeated, you can proudly say you fought a good fight.”

Jenny Koh

Hi everyone, I am Koh Jia En Jenny, 38 years old. I am an entrepreneur and owe a company providing skin care products and personalized gift services. I love cafe hopping, running & brisk walking, cooking, and watching drama.

In August 2018, I was diagnosed with undifferentiated connective tissue disorder. Shortly after, I had a full-blown flare and my ears, face, and joints were swollen. The doctor then told me that I had a rare autoimmune condition known as relapsing polychondritis. Due to drug allergies, treatments become more challenging. Each time I have a flare, my stay in the hospital can be from weeks to months and the hospital has become like my second home.

As my condition had caused my spine to degenerate, I experienced a loss of walking ability and was on bed rest for 50 days. I’ve tried many medications from oral methotrexate, to methotrexate injection, rituximab infusion, actemra infusion, and immunoglobulin infusion. Currently, I am undergoing cyclophosphamide therapy.

It can be quite draining at times to juggle my condition and career and I felt very unproductive. As we know stress is a trigger for our flares, I will go for brisk walks to sweat it out. Thank goodness that I always surround myself with positive vibes and set goals for myself so that I have something to look forward to during downtime.

During the pandemic, I take it as a learning journey to read and find out more about what Covid-19 is all about. One thing I learned through Covid-19 is about resilience and staying positive. Let your body receive the positive vibes and practice self-love.

I am thankful to my parents who are always there for me. My business partner and mentor give me the courage and determination to overcome all my challenges. I also have a team of doctors who never fail to assure me and give me encouragement.

Autoimmune disease is a long-term battle. Some may get into remission, and some may not. Some may struggle with complications. Many will never understand the pain we go through. Nevertheless, we can be advocates to inspire people around us and share tips on how to cope with autoimmune diseases. Remember you are not alone.

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