I’ve been involved in psoriasis blogging and advocacy since 2007 and I’m excited to host PsoHoward, a site dedicated to well-being and thriving with chronic illness.
When you’ve gone down a path for so long, sometimes you forget where you’ve been and where you are going. For the former, where I’ve been, I’ve included below my very first blog entry on my column The Itch to Beat Psoriasis called “A Proper Introduction from November 2007.
At the bottom I give my purpose for writing. I continue to write, and launch PsoHoward, with the same spirit of serving to connect and communicate about psoriasis.
[For where I’m going check out my article Educate. Advocate. Inspire.]
Since this is my first entry, I wanted to spend a moment to introduce myself. I have many roles, hats and ways to identify myself as anyone might. Telling others I have psoriasis is not my choice way of describing who I am. And, yet, having psoriasis is like the cheese on a pizza; it permeates and penetrates every single piece and part. This blog represents one way for me to share this part of my life with others that I normally would not (at least initially) and hopefully encourage others to do the same.
I have another reason I would like to write about my experience with psoriasis: I had so little personal contact and understanding about my condition throughout the years. When I was eight years old, red, scaly sores erupted on my knees and elbows. My father whisked me to the local dermatologist at our HMO who then referred us to the University of California at San Francisco medical center. After waiting some three hours for the dermatologist and his residents, I was poked and prodded for about ten minutes then given a diagnosis: plaque psoriasis. I don’t think we were so enlightened back then to address the emotional needs of a child with psoriasis. Certainly my parents, Chinese immigrants, did not communicate on that level with me.
Fast forward almost 30 years. Covered from head to toe with nasty sores and still smarting from a narrow-band UVB burn, I found myself sitting once again at UCSF in the psoriasis day-care clinic. (The HMO dermatologist petitioned for me to see a psoriasis expert at UCSF). The professor explained I had two options to treat the 95% coverage: cyclosporine and Goeckermann (a six-hour a day tar treatment combined with UVB). My dermatologists in the past scared me away from cyclosporine but I was desperate. Feeling alone and afraid I began the cyclosporine treatment I had avoided the last five years. At the time I remember wishing I had access to others who had endured the same treatments, faced the same fears, and took the same medications I had.
Now we have the Internet, blogs, newsgroups and a proliferation of organizations who publish information about psoriasis. I lived in Silicon Valley for 10 years and learned something about technology: It is a means to an end, a tool. I hope this blog can be a tool to contribute in a small way to the need to connect and communicate about that part of our lives that so often stays under wraps: psoriasis.