Emily T. - Diagnosed at age 14
When I was as young as a school aged child, I suffered from extremely large and painful ulcers all across the insides of my mouth. I had gone to doctors, but no one had been able to correctly figure out why I had these. When I started high school, I was sent to the doctor for what I thought was a reaction rash which turned out to be the malar rash. Blood work was done and I was immediately admitted to the hospital for treatment as my platelets had dropped dangerously low.
The SLE diagnosis happened and years of steroids and various other medications started. High school became increasingly difficult as I was suffering brain fog, rashes, fatigue, and joint aches. I was stable enough for a few years, but in college it reared its head again and I was admitted for more treatment and diagnosed with lupus nephritis.
Stress and lack of sleep were large causes of flares and still are. My current symptoms are fatigue, joint pain, brain fog, weight gain and now the nervous system is acting up. Through a research team, we discovered certain lupus medications were also preventing me from being able to benefit from the covid vaccines. I have had to use my mask for any social situation or grocery shopping.
I usually take the opportunity in May to share information on AAPI month and LFA facts on social media to help bring awareness. This year I am part of the Game On! group and streaming for the fundraiser!
Managing my lupus has been difficult as it likes to change symptoms from time to time, but with a good team of doctors and the support of my family, friends, and pups I have managed to stay positive through most of it. I have hope that we will see a cure in our lifetime and if we don't I truly hope we pave the way for a future that does.