Shaniyah W. - Diagnosed at age 15
My name is Shaniyah. I am 22 years old from North Carolina. I was diagnosed with Systemic Lupus Erythematosus just a few days after my 15th birthday. It took only three months to discover I am the first in my family to have lupus. I was just your normal active and driven 15 year old. School during the day volleyball games by night. It was rare for me to get sick or just feel completely burnt out. My initial symptoms started with extreme fatigue and I always just ignored the feeling because I’m so active; always moving around and thought “okay maybe I just need to rest I did put my all in practice today I’ll try again tomorrow.”
My next symptoms started with joint pain that ached and lingered. During this time I was a setter in volleyball. Me being me gaslighting again I thought “well you have been setting up plays all season it’ll go away once the season ends”. Now 7 years into my journey with lupus my symptoms include hypertension, acute kidney injury, pericardial effusion, joint pain, face swelling, chest pain, and extreme anxiety. Lupus impacted my daily life because it interrupted my schedule. Navigating freshman year in high school I was content with waking up everyday and having only the thought of being late to class to worry about. Now currently on a total of 13 medications and chemotherapy drug; I now have to really consider my health.
“Did you take your morning medicine and powders? You only drunk 3 bottles of water drink plenty of water your kidneys need it!” etc .
Staying active in the gym has helped me manage my lupus physically but most importantly mentally it’s my safe space. I have engaged in the shadows with Lupus Foundations of America. I have always been a very introverted person never really wanted the spotlight but I am confident in knowing now my purpose is to be the voice for those who are young like me and diagnosed with lupus but just don’t want to be known as the “sick one” like I did.
Honestly I tell others I am not sick I just have lupus. My support system gives me hope, knowing faith is the ingredient that causes outrageous blessings gives me hope but most of all knowing I’m far too capable to let lupus hold me back!