Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 My name is Lara. My younger sister was diagnosed a couple of months ago with PSC. is 21 years old, a student at the University of Florida. She's suffered from ulcerative colitis since she was 15 years old. (I realize this is a controversial issue, but we believe that the UC was an autoimmune response to the MMR vax she recieved directly before her first episode.) I will be around here, mostly lurking and possibly asking questions. I'd like to stay abreast of the current research-- while I peruse the many pages of notes here, can somene point me to any particular medical journals or other resources that I can keep track of? I also plan to make the trip to ville in May. Best wishes and love to all. Lara Sweetland, Pensacola, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 A great place to start is the FAQs at http://www.psc-literature.org/FAQ.htm. There is an astounding amount of information available at http://www.psc-literature.org/index.htm. If you have specific questions, please ask them here. We have a few physician members (at least three have been transplanted). Someone will have an answer to your questions. I have to commend you for making this effort. Please encourage Amada to join also - she may be surprised at how many of us share the same trepidations and concerns. Welcome - sorry you found us but glad you found us! Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of summerrain80 ....I will be around here, mostly lurking and possibly asking questions. I'd like to stay abreast of the current research-- while I peruse the many pages of notes here, can someone point me to any particular medical journals or other resources that I can keep track of? I also plan to make the trip to ville in May. Best wishes and love to all. Lara Sweetland, Pensacola, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2007 Report Share Posted September 30, 2007 Hi Lara, What a great sister you are to be proactive on behalf of your sister. I hope to meet you in ville. A few of the posts tonight mention Dr. Lindor as the guru at the Mayo Clinic in MN. As to the medical research, you can check the psc-literature.org website that has put together. Wishing you and your sister well! -Marie (55) (Tarzana, CA) UC 1970, Toxic megacolon 1977; Colectomy 2000 (PSC 1st suspected), J-pouch 2005-2006; PSC/AIH 2006. > >Reply-To: >To: >Subject: Introducing myself >Date: Sun, 30 Sep 2007 21:54:09 -0000 > >My name is Lara. My younger sister was diagnosed a couple of months ago >with PSC. > is 21 years old, a student at the University of Florida. She's >suffered from ulcerative >colitis since she was 15 years old. (I realize this is a controversial >issue, but we believe that >the UC was an autoimmune response to the MMR vax she recieved directly >before her first >episode.) > >I will be around here, mostly lurking and possibly asking questions. I'd >like to stay abreast of >the current research-- while I peruse the many pages of notes here, can >somene point me to >any particular medical journals or other resources that I can keep track >of? > >I also plan to make the trip to ville in May. > >Best wishes and love to all. > >Lara Sweetland, Pensacola, Florida > _________________________________________________________________ Get a FREE small business Web site and more from Microsoft® Office Live! http://clk.atdmt.com/MRT/go/aub0930003811mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Lara, We live in Gainesville and my 20 year old son who is a sophomore at UF was diagnosed with PSC and UC two years ago, actually the summer before he entered UF. My son was diagnosed after many tests just before he turned 18 and so goes to the pediatric GI section. My son is doing OK. How is your sister doing? What year is she at UF? Since your sister was just diagnosed and she is 21, she may be seeing Doctors at shands who treat adult cases. Rita > > My name is Lara. My younger sister was diagnosed a couple of months ago with PSC. > is 21 years old, a student at the University of Florida. She's suffered from ulcerative > colitis since she was 15 years old. (I realize this is a controversial issue, but we believe that > the UC was an autoimmune response to the MMR vax she recieved directly before her first > episode.) > > I will be around here, mostly lurking and possibly asking questions. I'd like to stay abreast of > the current research-- while I peruse the many pages of notes here, can somene point me to > any particular medical journals or other resources that I can keep track of? > > I also plan to make the trip to ville in May. > > Best wishes and love to all. > > Lara Sweetland, Pensacola, Florida > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Rita, That's neat. I wonder if they know each other? is about to graduate. I believe she is being trated at Shands, and has some doctors here in Pensacola as well. Honestly I don't know a lot about the details of her situation, since it's a topic we tend to avoid. She seems to rather go aout her life and not make a big deal about it. Which is understandable. I'm glad your son is doing OK. is doing well too, has no symptoms aside from the occasional bout of bronchitis or whatever, due to the immunosupressants. She is mainly concerned about how being DD all the time is affecting her social life... Haha. Will you be at the conference in May? Is your son planning to attend? Lara > > Lara, > > We live in Gainesville and my 20 year old son who is a sophomore at UF > was diagnosed with PSC and UC two years ago, actually the summer > before he entered UF. My son was diagnosed after many tests just > before he turned 18 and so goes to the pediatric GI section. My son > is doing OK. > How is your sister doing? What year is she at UF? Since your > sister was just diagnosed and she is 21, she may be seeing Doctors at > shands who treat adult cases. > > Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Lara, Iam not sure yet if I will be attending the conference. I have a 9 year old son so can't easily go somewhere because my husband works outside the country so I have to take care of him on my own most of the year. I know for sure my son will not be attending because he doesn't like talking about any of this. Like , he just wants to go about his life normally and not make a big deal about it. I am the one in the family who checks on information etc. I hope we get a chance to meet sometime. > Rita, > > That's neat. I wonder if they know each other? is about to graduate. I believe > she is being trated at Shands, and has some doctors here in Pensacola as well. Honestly I > don't know a lot about the details of her situation, since it's a topic we tend to avoid. She > seems to rather go aout her life and not make a big deal about it. Which is > understandable. > > I'm glad your son is doing OK. is doing well too, has no symptoms aside from the > occasional bout of bronchitis or whatever, due to the immunosupressants. She is mainly > concerned about how being DD all the time is affecting her social life... Haha. > > Will you be at the conference in May? Is your son planning to attend? > > Lara > > > > > > > Lara, > > > > We live in Gainesville and my 20 year old son who is a sophomore at UF > > was diagnosed with PSC and UC two years ago, actually the summer > > before he entered UF. My son was diagnosed after many tests just > > before he turned 18 and so goes to the pediatric GI section. My son > > is doing OK. > > How is your sister doing? What year is she at UF? Since your > > sister was just diagnosed and she is 21, she may be seeing Doctors at > > shands who treat adult cases. > > > > Rita > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.