We provide education and support to primary sclerosing cholangitis (PSC) patients, families and caregivers. This disease damages bile ducts and the liver. Help us in the fight to increase the quality of patient's lives and to support research for a cure!
Web Site www.pscpartners.org
By Ricky Safer, CEO, PSC Partners Seeking a Cure
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. “Is there anything you can do for me?” He answered, “We can try to continue treating the symptoms, but there is no cure." “Where can I find more information on PSC? A support group?” His answer, “There is little available.”
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 craved two things: more accurate information and the support and wisdom of other PSCers who could guide me on this somewhat terrifying journey.
My family and I decided that we could do something to try to make life better for PSCers and stimulate research to find that elusive cure for PSC. PSC Partners Seeking a Cure was created.
Once we launched PSC Partners Seeking a Cure in January 2005 and held our first conference, we were well on our way to success.