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Liver transplant - Let's support each other
Transplants | Last Active: 4 days ago | Replies (1617)Comment receiving replies
Rosemary - So glad I joined this group and happened upon you. You have given me hope & encouragement as we begin our journey to transplant. Rare group indeed. I've yet to tell a friend or family member about my son's PSC who knows what PSC is. I have a couple of close friends who have been doing medical transcription for 20+ years and even they had never heard of it. Even rarer still is your being female and 50 where we have learned PSC predominantly affects 30-40 year old men. I wish we did not have to meet under these circumstances but am extremely grateful you have chosen to use your experience to mentor and guide us.
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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?