Dear PSC Community,
We here at Ben’s Friends Rare Disease Communities wish you and your family a very Merry Christmas and a Happy New Year. It’s been a privilege to get to know many of you over this past year. As the fight with PSC goes on in our lives, may we look with hope for a brighter future as the new year unfolds. We are all at different points with this terrible disease but may we encourage one another and do all we can to be a light of hope to each other in these dark times. Please know that you are not alone in your battle but we are here for you and will do all we can to help you along the way. Have a good day and a wonderful new year.
I’m a newcomer to both this site and the world of this disease; my son was recently diagnosed just a week before his 22nd birthday. As I discovered PSC, I was (and still am) overwhelmed by fear and anxiety. This forum has proven to be of great help. While there’s a lot of scary information that has brought tears, there’s also a source of first-hand insights that are hard to come by on the internet. Most importantly, I’ve discovered a small hope in some stories of people living normal lives. It gave me some hope that not everything is as hopeless and frightening as it was a few weeks ago. Thanks again for providing support for people when they need it the most.
I remember when I was diagnosed with PSC. At first, I didn’t think much about it because it was explained that my bile ducts were like a pearl necklace, and here take these pills. It wasn’t until months later when my gastroenterolgist kept saying liver disease that I finally said, I think you have the wrong patient, I have narrowing of the bile ducts. He looked at me and said, “That is liver disease.” That weekend, I had a panic attack. I have Crohns disease, and I guess 1% of Crohns patients get PSC. I was 32 and now I am 60. I haven’t had any problems to date. My doctor took me off Actigall because he said I didn’t need it. I think I was 40 when he took me off that medicine. I have two beautiful daughters, 28 and 23. I was on a Facebook page way back in the beginning. I was introduced to a young lady who had PSC. She was married and working as a teacher. We have stayed in contact. She had a liver transplant over 20 years ago and she is doing excellent!
May the Lord comfort you and give you peace.
Carol
Thanks Jeff. We certainly continue to appreciate all you do for this forum. Your continued work as a moderator really makes a difference in these patients lives. We must give them hope amidst the seriousness of PSC. I have also over this past year started assisting in the broader Bens Friends organization hoping to be a greater help.
I hope your health is well. The last two years or so have been a real struggle for me with two major transplant revision surgeries in 2022. I’ve been in an out of Duke over 100 days since this all started. Doing much better having gone four months without the need of hospitalization. Very thankful.
Trust you and the family are well as we enter into another year of life. Take care.
Mark, keep that streak going.
I hate that you are having these issues post-tx; you and you wife paid your dues pre-tx.
Thanks for your being a mod here too.
Happy New Year, everyone. I hope 2024 bring you better health.
Jeff