2019 Walk to End Lupus Now New York City

Amanda's Lupus Warriors

Dear family and friends, please join me in the fight to end lupus!

I will be participating in the Walk to End Lupus Now in New York City on May 4 as a dedicated advocate seeking a brighter future for the lupus community. I am walking to raise awareness about this complex, elusive, and sometimes fatal disease. I am walking in solidarity with the 1.5 million Americans suffering under its unforgivingly volatile nature. I am walking for those who cannot because there were some days that lupus made me so weak that I could not. And I am walking because -- at least, right now -- I can.

All donations will be going to the Lupus Foundation of America’s efforts to improve all lives affected by lupus, accelerate lupus research, and secure access to affordable medicines. The Foundation has played an invaluable role in my six-year journey with systemic lupus by providing me with answers, support, and hope every step of the way -- from diagnosis to present day. Your contribution can make a definite impact in fighting this cruel and mysterious illness.

Amanda’s Journey

My story is one of courage, resilience, and hope.

Like any other 17-year-old, I was resolute in beginning a journey to “discover” myself by leaving home and starting my studies at university. But just months before departing for Boston College, my hair started to fall out rapidly with no explanation. I visited many doctors who attributed the hair loss to stress-induced alopecia, as I was working tirelessly as both a World Champion martial artist and conscientious student. Most physicians assured me that there was nothing more grave to worry about; however, my symptoms persisted and became progressively worse. During a routine steroid injection of my scalp, one health provider conducted a more holistic assessment of my condition. Noticing that I had a lifelong history of skin inflammation, allergies, and photosensitivity, she suggested a precautionary biopsy to rule out lupus. Low and behold, lab results from that biopsy -- along with additional blood work confirmation -- led to a string of rheumatologist consultations and an eventual diagnosis of systemic lupus erythematosus.

The 17-year-old me was correct in my prediction that I was to discover the very core of who I was during the next few years… in Boston and beyond. I have experienced the profound toll that living with chronic illness could take on both mental and emotional well-being, and I continually learn to navigate life as a young woman whose body reserves the right to shut down whenever it feels inconvenienced in the slightest. The tumultuous nature of my lupus flares has been scary, burdensome, and sometimes has the ability to make me feel as though my disease is something to surrender to. But in spite of all the pain, fatigue, and bodily changes that my six-year battle has thrust upon my life -- and the difficult bouts with steroids, chemotherapy drugs, and infusions that came with the territory -- I have become a much stronger me.

In the face of adversity, I have discovered my strength. Although lupus has tried to impose its restrictions on my dreams and aspirations, I have learned to adapt to the ups and downs of chronic illness and push through when times get tough. By thinking forward when feeling weak, I was able to finish school, find meaningful work, become a martial arts athlete once again, and continue in stride toward my career in medicine. To think that I could accomplish all of this when there have been days that lupus has rendered me too frail to get out of bed still amazes me sometimes, and I attribute it to the grit I have acquired through my formative experiences. My strength has afforded me with a unique shift in perspective that has shaped both how I conduct myself and my views on compassion, empathy, and quality medical treatment and support for those who need it. I was fortunate enough to have support on all fronts since my lupus diagnosis, but I realize that not everyone has that luxury. Because of this, I hope to be an advocate that brings visibility to this disease -- to reach out to others suffering alongside myself, to empower fellow warriors to embrace their struggle, and to urge lawmakers to support funding for critical lupus research and education programs that will accelerate the search for new treatments and improve the lives of people affected by lupus.

Because at the end of the day, I’ve discovered that... I have lupus, but lupus does not have me.

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.

Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? What's more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.

 

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