Re: Dora

[Guest guest]

Dear Dora,I know the scary place you are in and please know that as you find out more about PSC andwith the help of the people in this group, that you will be in a better place soon.Yes, your daughter has a serious disease, but is a slowly progressive disease and many live asymptomatic for many years.Some people in this support group have had this disease for 20 + years.WIth the help of this wonderful support group a foundation called PSC Partners Seeking a Cure was started.The web site is www.pscpartners.orgYou will find a lot of helpful information there that was probably not given to you with the diagnosis.Please look at the brochures and past newsletters to start learning about PSC.My son was a junior in college and 21 years old at diagnosis. He was already very sick at the time with serious issues.I only wish he was asymptomatic when he was diagnosed. Still, he is now 26 and is living on his own in NYC.We deal with his health issues as they come up but the doom and gloom I had at diagnosis is now packed away so thatlife goes on a more normal ebb and flow of good and not so good.We also went to the Mayo Clinic in Rochester, MN. but the Mayo in ville FL would be closer to you, should you decide to contact the States for a second opinion. Others here from Australia can help you find a good Dr. where you live.As your questions come up, this is the place to bring them,Lee mother of Bill 26 UC/PSC 04 Jpouch 05My daughter Olivia was diagnosed with PSC a few months ago.I have asked what stage the disease is in and I only get blank stares and no answer. I have had to research the disease myself as having my daughter in the room with me, the medical staff are reluctant to discuss future complications of this disease.I understand that it is a rare disease but even rarer in one so young. My daughter is 13 but I believe that it has been undiagnosed for a while.Many of you talk about the Mayo Clinic. Can a doctor there work in collaboration with doctors here in Australia? How can I access someone who obviously is experienced in this disease. It breaks my heart when I read some of your stories as I would rather go through this than my daughter.Another question, I know that there isn't a cure but (a) what is longest time you have heard of someone being in remission and ( what tests are given to check for CCa. The doctors here haven't even breathed this possibility to me let alone keeping an eye out for it! and © Is there someone from a Mayo clinic that I can access through email who is willing to advise us in regard to her biopsy and bloods? Thank you in advance for any replies. Our journey is just beginning and it is so, so scary.Dora