By Ricky Safer, President of PSC Partners
Lapsing back into consciousness, I struggled to remember where I was. My mind felt like cotton: my throat felt battered, and I sensed strange pains everywhere. I opened my eyes to see the forced smile of my always-positive husband and the sad eyes of the rest of my family. "She's up!" my husband uttered in a voice that was trying too hard. I realized from afar that the ERCP I had dreaded was completed.
In my medicated state, all that I could decipher from the doctor’s update was, “Ricky, you have PSC.” I closed my eyes again, and each time I reopened them, my family was still there. I kept asking the doctor the same questions over and over in my slurred voice. “ Is there anything you can do for me?” He answered: “We can try to continue treating the symptoms, but there is no cure. ” And then, again and again I muttered: “Where can I find more information on PSC? A support group?” His answer: “ There is little available.”
As a person who had been a health and fitness fanatic my whole life, this sudden shocking change in my lifestyle and future was a rude awakening. Like all my fellow PSCers, this diagnosis threw me into an emotional tailspin. I was suddenly dealing with anxiety, fear of the unknown, anger, worry about my family, and a host of other emotions. The start of my journey with PSC was so lonely and confusing. I’m extremely lucky to have a loyal and loving group of family, friends, and colleagues who support me, but it wasn’t enough this time.
I craved two things: more accurate information to fight this dreaded disease and the support and wisdom of other PSCers who could guide me on this somewhat terrifying journey. When I finally discovered the Yahoo support group online, where I connected with a group of incredibly knowledgeable, compassionate, and supportive PSC patients and caregivers, I knew that my journey had taken a turn for the best. Now, it was time be proactive!
Talking to other PSCers online made me realize that we all shared the same concerns, anxiety, and frustration at the lack of available education and support and the dearth of PSC research internationally.
My family and I talked constantly and finally decided that we could do something to try to make life better for PSCers and stimulate research to find that elusive cure for PSC.
From the online group, I enlisted the help of David Rhodes and Lee Bria, who offered great advice and direction. David had already started his invaluable literature site, and we were all able to join forces to get things off the ground. My daughter Elissa volunteered her time and expertise to complete all the legal work needed to set us up as a functioning nonprofit foundation. My husband, Don, was my lead spokesman, chief advisor, and ardent supporter. Dr. Greg Everson, of the University of Colorado Health Sciences Center, immediately joined us in this challenge and worked diligently with us to organize our first conference four months later for PSCers and caregivers in April 2005.
Once we launched PSC Partners Seeking a Cure in January 2005 and held our first conference, attended by 84 enthusiastic supporters, we were well on our way to success.
Today, PSC Partners Seeking a Cure is continually expanding our programs, thanks to the expertise, advice and help from our talented board of directors, Scientific/Medical Advisory Board, and our members. We remain a true working partnership between PSC patients, caregivers, physicians, nurses, nutritionists, pharmacists, and researchers. Together, we form a unique community that acts as a family for PSCers and caregivers and offers hope to all of us. I’m proud to say that together we’ve raised more than $1,000,000 for research into the disease and we’re still going strong. We WILL find a cure for PSC! Please join us.