Seventeen days from the day that I do this walk, I will be celebrating 5 years living with my sweet little transplanted kidney! On December 3, I will be celebrating 11 years surviving the worst 3 months that truly changed my life because of lupus and its treatments.
You might already know my story but just in case (please note lupus and its drugs affect each person differently):
"At age 15, my doctors suspected lupus triggered TTP, a rare blood disorder, which was threatening my life. My family was told I had a 50% chance of survival. Through blood donations by family and high school classmates, my life was spared by plasmapherisis. I required so much plasma that I depleted my school's blood bank.If my doctors didn't save my life that day, I would've been brain dead.
At age 21, in my final semester of college, I was diagnosed with Lupus Nephritis. I managed classes, exams, and doctor appointments, while having treatments of Cytoxan chemotherapy and high-dose prednisone. Side effects caused my body to change from a young, vibrant college kid into one who was heavy, lethargic and full of pain. My suppressed immune system caused me to develop shingles and pneumonia. Despite the odds, I graduated on time and made the Dean's List!
At age 37, after long-term use of Mycophenolate Mofetil for Lupus Nephritis, I developed Central Nervous System Lymphoma. When a brain biopsy confirmed diagnosis, I was given 6 months to live. Three months in the hospital dealing with kidney failure and a suppressed immune system, I endured dialysis complications, radiation therapy and a life-threatening MRSA infection. The outlook to remove the infection was grim and my family was advised to say their goodbyes to me saying I only had two weeks to live. Post-surgery, I was put under a week-long, drug-induced coma so I wouldn't have to endure pain that doctors said "no one would be able to endure..." When I awoke, my husband was holding my hand and cried, "You have to fight!" After knowing my husband for over 14 years as a mellow person, I have never seen him full of encouragement and despair at the same time...and so, I fought..."
So how did I fight?
- In 2010, I told this story when I testified at an FDA hearing on why Benlysta should be approved. It was approved the following year! Benlysta is the first lupus-specific drug approved by the FDA in over 50 years.
- Also in 2010, i was honoree for the San Francisco Walk Team in Training (TNT) and Silicon Valley Cycling TNT, in which I spoke at their TNT Kickoff Party of over 500 participants and guests
- In 2011 and for several years after, I participated in 3 lupus walks to raise awareness, funds for research and programs until 2017.
- On November 7, 2013, I received my transplanted kidney after being declared in remission from CNS lymphoma!
- In 2014 and 2016, I shared my story to the Lupus Foundation of Northern California at their 36th Anniversary Gala and as honoree at their Drumbeat to a Cure 5K Walk/Run, respectively.
By the way at the end of my testimony to the FDA, I said "This drug [Benlysta] may not be for everybody with lupus. But it creates a catalyst toward future development of other lupus treatments, and it gives hope to everybody who has lupus." It has! Most of the articles I post on SFLupusSupport.org are about lupus research and pharmaceutical stocks that rise or drop due to the success of their lupus drug trial. On ClinicalTrials.gov there are 664 studies/clinical trials occurring and/or completed. National lupus organizations also participate in research and fund grants for scientists. There is hope!