Hi, my name is Lya,
I was gifted with Lupus for my 16th birthday. I was fortunate enough to get diagnosed within a 2 weeks time span, which is not the case for many warriors. From being diagnosed, lupus quickly caused my kidneys to inflame, which later resulted in being diagnosed with Chronic Kidney Disease (CKD).
Lupus, also known as systemic lupus erythematosus (SLE), is a chronic autoimmune disease. This means that the immune system, which normally defends the body against anything harmful, gets confused and attacks healthy tissues and organs. Lupus can affect various parts of the body, including the skin, joints, kidneys, heart, lungs, and brain. The exact cause of lupus is unknown, and there is NO cure.
I have been battling this horrid disease for 11 years. I’ve been in & out of the hospital countless times and unfortunately have been close to death just the same. My kidney's functioning rate has been declining for the past several years, right now it is at a rate of 14-18%. I am currently on an active search for a live kidney donor which I started in December of 2019.
When I was first diagnosed with lupus, it was alarming to me that not only did I never hear of this disease but so didn't the people around me. This resulted in me declaring myself a Lupus advocate and immediately sharing my story across my different social media platforms. It was a way for me to start a sort of “awareness campaign”. People would always tell me they learned so much about lupus from reading my posts.
I created Team Cryptic Wings (@Crypticwings_) in 2017, to focus on spreading lupus awareness in Boston, MA and all surrounding areas. Spreading lupus awareness as a lupus warrior is crucial for several reasons. It plays a crucial role in improving the lives of those affected by the condition. By educating others, advocating for resources, and fostering a supportive community, we contribute to a brighter future for individuals living with lupus. Many people are still unaware of what lupus is and how it affects individuals. By raising awareness, I can help educate others about the condition, its symptoms, and its impact on daily life.