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Liver transplant - Let's support each other

Transplants | Last Active: 4 days ago | Replies (1617)

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@rosemarya

Stella, I do not fit the mold! I also do not have the IBS that many patients with PSC have. I do have a history of some autoimmune conditions on my mom's side of the family. For example, I have an autoimmune skin condition (vitiligo) as did my mom and grandpa.
I have located 2 older discussions where members are talking about PSC. They might contain something to let you know that there are others.
In the Digestive Health Group -
https://connect.mayoclinic.org/discussion/primary-schlerosing-cholangitis/
In the Healthy Living Group - PSC of the liver
https://connect.mayoclinic.org/discussion/psc-of-the-liver/
If you haven't already seen in Mayo's Patient Care & Health Information: Diseases & Conditions: Primary sclerosing cholangitis
https://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/symptoms-causes/syc-20355797
I was originally treated in Kentucky, but was sent to Mayo Rochester to see one of the doctors who is featured in the PSC Pages. Will your son be treated at on of the Mayos?

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Replies to "Stella, I do not fit the mold! I also do not have the IBS that many..."

Thank you Rosemary for sharing those links to PSC discussions. Mayo does an outstanding job of keeping us educated and up-to-date. They provide wonderful tools that have been extremely beneficial in our navigation of PSC & transplant. That's interesting, my son does not have IBS either. His doctor didn't really say if there was any significance in his not having it other than it's one less thing to worry about. Also interesting you mention a history of autoimmune conditions in your family. Many years ago I was diagnosed with Epstein-Barr virus. It was assumed I had mono that was left untreated. I don't fully understand it but I believe there are studies to show a correlation between EBV & autoimmune diseases. Just makes me wonder if there is something I passed on to my son genetically. There is so much research yet to be done! My son is receiving treatment at the University of Utah's Liver Clinic & Transplant Center. There is a team of doctors that consult on his condition. One of his doctors told us about the Mayo Rochester Transplant Center and what an excellent facility it is (and you are living proof!). That's what led me to the Mayo website.