Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Rob, I'm sorry to hear of your son's diagnosis, but I'm glad that you found our group. We have several other members that are parents of PSC children. Please keep us posted, and let me know if you need anything. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Rob, Your thought on the immune system overreacting reminded me of Carol's post on 31 Oct of research with intestinal worms (/group//5983.html?). The theory was that we have coevolved with the worms, which dampen the immune response so they can thrive in humans. In our sterile environments (without worms) the human intestinal inflammatory response is unchecked, and may causing disease. Tim --- Rob Raizk wrote: > Hello Everyone, > > My name is Rob. My son is 8-1/2 years old. He was Dx > in 1993. > . . . I think his body's immune system over > reacted to a common viral condition and has never stopped > attacking since, i.e., liver, intestines. > Thank you very much, > > 's dad, > Rob __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2000 Report Share Posted January 30, 2000 Anita, Welcome to the best PSC group on the internet!!! I have belonged for at least 2 years and like you I did not know anything about PSC. We have so many knowledgeable people in this group and soon you will understand this horrid disease -- well maybe not horrid, but at least aggravating! Again WELCOME! Hugs, Biddy new member > Hello everyone, > My name is Anita and I am 36 years old. I just recently joined because my DR > thinks I have primary sclerosing colangitis. I just recently had my gall > bladder removed (Jan 5 ) and they discovered something wrong with my bile > ducts. I have my first ERCP on February 15. My DR says this will definitely > determine whether or not I have PSC. I am a member of the liversupport group > also because I was originally diagnosed as having autoimmune hepatitis. I > wonder if the DR's will ever figure something out. I don't know a lot about > PSC so any information any of you could give me would be greatly appreciated. > > Anita G > Texas > > ------------------------------------------------------------------------ > Save 50% at MotherNature.com! See site for details. > http://click./1/766/4/_/24674/_/949276059/ > > -- 20 megs of disk space in your group's Document Vault > -- /docvault//?m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Peg, I live in Mansfield, TX just south of Arlington. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Carol, I read the article and it explained a lot I didn't know. I will also say a prayer for us on the 15th. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Welcome Anita, I too hope you don't have PSC but we will be here for you for information and emotional support if you need it. I'm 31 y/o, and a status 3 on the transplant list. I have had the disease for 4 years and have been listed for 2 years. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 Michele, Thanks a lot but I don't fully understand the disease and that may be to my benefit. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2000 Report Share Posted February 1, 2000 Welcome Anita Hi its Luanne...I am also on the Liversupport Group...I do a lot of reading..but not as much posting...I did send you the info about this PSC group and am glad that you are hear... There are a lot of great caring people here who will answer your questions and listen to you vent.... Welcome.. Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Hello to everyone. Before I provide you with background information I want to say that each of you are in my thoughts and prayers daily. My name is and my brother was diagnosed with PSC in August '99. is soon to be 38 years old, single and lives on Long Island, NY. I reside in NYC. 's symptoms began with fatigue, jaundice, itching, pain and fever. He was diagnosed on one day, the next he was admitted into the hospital for varices bleeding. Our introduction to PSC included various procedures including banding, ERCP, colonoscopy,and transfusions. He was " stented " in August, October and February. He has been banded twice and admitted to the hospital for pneumonia once. On the plus side, does not have UC. Before we left the hospital in August, we had our first appointment scheduled with NYU transplant center for an evaluation. Upon evaluation was listed at level 3, however, due to the classic organ shortage, they were recommending living donor. Five of 's siblings were tested, and his older brother was a match. They wanted to transplant immediately. We became very nervous when we were informed that would have been he first living donor transplant at NYU. This was difficult to conceive. A major transplant center in a major city conducting their first living donor in September, 1999. WOW. By the way, since that time, I believe they have transplanted 3 living related. We put the " brakes " on not only because we didn't want to be the first of his kind, but also for a number of other reasons pertaining to his care. I would be happy to discuss the specifics with anyone in the NY area considering NYU. 's GI is affiliated with North Shore Hospital on LI - yes the new home of the infamous Dr. Jeff Kahn. While at the hospital yesterday (stent), I sought out and introduced myself to Dr. Bernstein (chief) inquired about Dr. Kahn, and more importantly informed him of the PSC support group and the need for our help, care and research. Dr. Bernstein informed me that Dr. Steinberg (staff) is a major PSC researcher and he invited me to have lunch with both for further discussion. I'm uncertain what will come out of this meeting, but it's surely a foot in the door. I will post any information immediately. On that note, I want to tell you what I do for a living and what I have been doing " behind the scenes " . I own a medical meeting management company. I plan medical meetings for pharmaceutical companies. I am presently working with Schering-Ploug on a " liver project " pertaining to Hep.C. However, this project has introduced me to the major liver (players) specialists across the country. I'm working with Dr. Kaplan, Lee, Thulavath, Schiff, Bacon and . Centers include USC, Mayo, Hopkins, UofMiami,Pittsburgh, Scripps, UCLA, UMDNJ, UofNC, Chicago, Northwestern, MtSinai, UofAlabama, just to name a few (85 in total). Baylor is also on my list and I am pained by each of the postings from . Although I have not spoken at length to Baylor (Dr. Ghablib) I plan to do so. However, with each of my (business) discussions, I feel compelled to talk about the group, the lack of research and what we can do to help find a cure, or a the very least treatment. I will post more information as its received. I have been in touch with ALF and the AASLD (study for liver disease) to offer my professional services (complimentary) to plan PSC conferences, fund-raising, anything to bring awareness to PCP's, GI's and certainly to the public. PBC is nearly there (thank goodness) and now it's time for PSC to " catch-up " . In September the first PSC conference is being held (Atlanta possibly) for MD's and being supported by AASLD and Axcan (manufac.of Actigall). I will follow this and keep you posted. Back to , displeased with NYU, I contacted the Mayo Clinic, ville and they agreed to see him for an evaluation in December. We were set to go until 's insurance co. (Oxford) said NO. His plan does not allow him to leave NY (network) and therefore will not pay 1cent. Because of this " glitch " I have contacted our local congresswoman (Caroline McCarthy) who informed me yesterday they turned over information to Elliot Spitzer (NY). Over the next week or so, I intend to contact Bill Bradley's office as well as Hillary Clinton. I don't know if any of this is going to make a difference (I pray it will) but we have to try. I think the suggestion of the data base is a great one. I will discuss it with the MD's (I trust) to get their input. had to spend the night in the hospital due to stent pain. (They put in 2) He should be ok today, they say, I will let you know. Sorry this was such a lengthy message - I tried my best to keep it brief. Until the next time, the candles remain lighted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 , Wow! Thank you for being such a great advocate for us PSC'ers. I look forward to hearing more information from you. I hope your brother is feeling better. My thoughts are with him. Eileen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2000 Report Share Posted February 4, 2000 , Welcome to the group and thank you for the very informative message. Sorry to hear about and all the problems that he had at once. You both are in my prayers. Larry - Baltimore UC-95 PSC-96 Quote Link to comment Share on other sites More sharing options...
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