PSC has been a challenge

I remember like it was yesterday when the gastroenterologist told me I had PSC. I had no idea what that was and what it meant. She wanted to send my biopsy out for a second opinion and it was confirmed. For a while I figured if I ignored it it wouldn't matter but the truth is it did matter.

The information is limited as to describing the disease and the process that happens. Working as a health information management specialist at a home care agency I learned that there is always ways to find information. One of the most discouraging things though was not many doctors in the Philadelphia area are familiar with PSC and there are no support groups here. I am not one for getting into a lot of discussions but it would be nice to meet people face to face and talk about how you are making it through.

I have only come across one other forum which is PSC Partners. I wished that I could have made it to the conference last year but I was unable to do so. I created my own blog to talk about what is happening to me. Each day is a challenge because of the fatigue or feeling like everything I eat just makes me ill.

I know that I can still live a active life and I am choosing to do what I can to make it happen. So each day is a blessing no matter the outcome.

My blog site is stop by and say hello when you have a moment.

Hi Amiez1972,
Making a website is a great idea,but unfortunately I’m not able to visit your web because of the internet censorship in our country,I’m really sorry about this.:frowning:
I wish I could visit.damn this government!

PSC is extremely rare. Most doctors, including gastroenterologists, only know about it from a medical text the read in school. Get referred to a transplant hospital where you will be cared for by a Hepatologist (Liver specialist). The hospital is likely affiliated with a medical school. University of Pittsburg has a fine transplant program.

Finding a PSC support group will not be easy. Livingwithpsc is a great site. I found it pre-transplant, and am now 26 months post transplant. I had PSC. Take all the meds you doctor prescribes and keep a positive attitude. Stay healthy as you can.

The PSC partners conference is coming up in a few weeks in Denver. I have been to conferences twice, even though I had to come from the other side of the world for it. It is really helpful. In some ways patioents I met there closer to me than part of my family. It is such a heart warming experience.