AN UPDATE (Jan 2019): More details in the Updates section, so please check there for the latest on what is happening, but the situation continues to be dire. The help that has come in has been tremendously generous, and we are blown away by your compassion. There continue to be obstacles and challenges, but we are hopeful for 2019. We have increased the funding goal as Porochista continues to need funds for ongoing medical treatments, travel, caregiving assistance, and so many other things associated with trying to heal and get through this. THANK YOU all again.
Porochista Khakpour is an author, teacher, advocate, friend, and, in no uncertain terms, a survivor. Porochista was diagnosed with late stage Lyme Disease in 2011, but it is unclear when she originally contracted the disease. Doctors have pinpointed the range 2006-2009, though some doctors believe she's been afflicted since childhood. For the last decade she's been in and out of hospitals, receiving new treatments and -- since no test can show if late stage Lyme has been fully cured -- living in fear of the next relapse. Porochista's forthcoming memoir SICK examines the frequent hospitalizations, her battles with depression and overcoming addiction, and the emotional and financial tolls of a life lived in the shadow of illness, betrayed by her own body and uncertain of her future. But Porochista's story isn't just her own, it's also a call to action for the medical community and a validation for the hundreds of thousands of people suffering from Lyme disease in silence. Roughly 30,000 new cases of Lyme are reported to the CDC every year, but they estimate that more than 10 times that many go unreported. As a result, research for the disease is underfunded, doctors are ill-equipped to diagnose its symptoms and treat its many complications, and people afflicted with the disease are often left without proper care, feeling confused and alone. Experts put the average cost of late-stage Lyme as somewhere around $20,000 to 200,000, and the annual cost of Lyme disease in the United States is over $1-3 billion as of 2017.
We're reaching out to you, friends and strangers alike, because Porochista's own fight with Lyme is not over -- her illness returned with a vengeance this winter while she was teaching in New England, and to complicate matters she returned to New York to find that her apartment had been filled with lead and asbestos dust from neighboring demolitions. She has been left essentially homeless, relying on her friends for hospitality as her disease continues to worsen. (As of May 10, Porochista has just received test results that indicate very high inflammation markers in her body as a result of Lyme and mold.) On top of that, SICK is released in June; Porochista is a true believer in the power of telling your story in person and has worked tirelessly over the last year to set up a tour to correspond with the book's publication, but with her Lyme relapse the financial cost of a book tour (and the Lyme-related travel precautions) is well beyond what she can afford on her own. Our spirited, independent friend is dragged down by her symptoms, drowning in medical bills, and left without the time or money to properly search for a new home. She's currently in San Francisco seeing yet another doctor, relying on another friend, and receiving treatment that insurance won't cover. So please, every dollar you can give will help towards Porochista's treatments and expenses as she continues to battle Lyme, raise awareness, and hopefully help usher in a brighter future for the next generation afflicted by this disease.
Thank you, you generous, lovely people,
- Janice & friends of Porochista