In 2008, my family and I traveled to Israel for winter break, my first, and still only, trip there. To this day, friends tell me their first trip to Israel was life changing. Extraordinary! Spiritually and emotionally rewarding! My trip, too, was life changing; the start of a new, lifelong journey. One night I went to bed a regular 16 year-old girl, whose biggest anxieties were learning how to drive and scoring well on the SAT (okay, and boys, too), and the next morning? I woke up a stranger in my own body.
Have you ever woken up to that momentary terror that your arm stopped working because it had fallen asleep? While the details have become hazy, I remember this with certainty - I woke up as I would any other day, and truly thought my hands had stopped working. Stiff as steel, and agonizingly painful with any movement. Where zipping and pulling up your jeans becomes so excruciatingly difficult you question why clothes even exist.
One thing became clear – something was very wrong inside my body. When we returned from Israel, I started doing lab work with a local rheumatologist to figure out why my joints were going haywire. Initially I received an answer of rheumatoid arthritis (not exactly what I’d planned on getting for Hanukkah that year), but still we tested on. After two months of being pulled in and out of school for tubes and tubes of blood, my parents heard from the doctor. As parents, my mom and dad bore the burden of sitting me down and passing on a diagnosis we all knew next to nothing about at the time.
What the f*ck is lupus?
Unpredictable. Invisible. Incurable. Lupus is everything, and nothing at all. I don’t look sick on the outside, but I carry my lupus with me everywhere I go. That was my new normal. When you’re diagnosed with a chronic illness, you adapt. You grow. You learn how to become the person you’ll need to be to fight forward and keep on. At 16 years old, two months post-diagnosis and upended reality, I would not sit around and feel sorry for myself. I needed to adapt, to figure out how I would become a fighter. I found the Lupus Foundation of America online and set up a fundraiser. I quickly raised over $10,000…and I liked how that felt. I soon found a community that I needed in the LFA, people with answers to my many questions, people that were going through exactly what I was living.
I am proud to call myself an ambassador of the LFA. The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, while giving caring support to those of us who suffer from its brutal impact. Our work takes time, energy, outreach, advocacy, and a whole lot of dedication and resources. It often takes the lives of our friends and family. It takes everything we have, because a cure is everything we need. But for now, we walk.
I hope you’ll support my 7th Walk to End Lupus Now, and join Team Rab on Saturday, May 5th as we take one step closer to finding a cure!
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.