I still remember that night, late 2017, we were at my parent’s place, Yi He suddenly complained of her right arm pain and itchy. My mom and I checked on her and realized that her arm has a patch of redness, felt warm and hard. immediately I took a pen and draw the outline of the affected area. We applied some medication for her and told her we will observe a few days and see how it goes and tell her to alert me if the pain or itchiness get bad.
2 weeks went by, the affected area doesn’t reduce or increase in size, no itchiness and pain reported by her. One night she complained of stomach pain, so we brought her to KKH A&E, nothing serious, so I told the Dr to help me arrange an appointment for Yi He on her arm problem. They took an xray at the same time.
The appointment date was arranged last than a month. We saw Dr Uma from KKH, and she arranged a biopsy test for her.
When the result is back, she’s diagnosed with Linear Scleroderma.
Scleroderma is a rare autoimmune disease that involves the hardening and tightening of the skin and connective tissues. For more, you can read over here.
At that point in time, I don’t have negative thoughts on her diagnosis even though is rare, and the hardening slightly got better few weeks after taking the steroid. Unfortunately, it doesn’t seem this way. Somehow after almost a year of treatment, it’s not working. It started to affect her fingers. She can’t close properly and her index finger is not in alignment due to the hardening. Prof Tash was arranged to see immediately the next day.
The same day they started her with injection and physiotherapy. Although I came mentally prepared, is actually heartbreaking for me to see my daughter going through this. I keep telling myself that I took up nursing is not to treat my daughter, not to feed or give her medication every day. But changing to another point of view, she adapts it faster because I’m able to administer the injection at home. Where she feel less fear and more love.
Ever since her increase dose of steroids and weekly injection, we are slowly changing her diet to control her carbo intake and overcome the side effect of methotrexate injection. Even though Leann is not a picky eater, but is not easy. Because of the medication, it may have affected her taste buds, so some food even though she had it before, she finds it nasty now. She gets irritable easily, so takes time to explain to her why she needs to eat this food.
It’s not easy for her as a child, but she has been very cheerful and positive about her condition. Hence, the birth of this blog. She is so happy and really hope one day she can inspire people on her condition.