Guest guest Posted January 12, 2005 Report Share Posted January 12, 2005 Dear Nichole; I don't know the answer to your question, but I do know of only one report in the literature where twins BOTH had PSC: Gastroenterology. 1983 Nov;85(5):1160-5. Familial occurrence of primary sclerosing cholangitis and ulcerative colitis. Quigley EM, LaRusso NF, Ludwig J, MacSween RN, Birnie GG, Watkinson G. Members of three families had primary sclerosing cholangitis and chronic ulcerative colitis. In each family, two siblings were affected; in one instance, they were twin brothers. All six individuals had primary sclerosing cholangitis and five also had ulcerative colitis. These cases represent the first reported instances of the familial occurrence of both primary sclerosing cholangitis and chronic ulcerative colitis; illustrate the typical clinical, laboratory, radiologic, and pathological features of primary sclerosing cholangitis; and support the hypothesis that genetic factors may play a role in the etiology of this obscure disorder. Publication Types: Case Reports PMID: 6618106 Best regards, Dave (father of (19); PSC 07/03; UC 08/03) > > Does anyone know if there have been any cases involving PSC with > identical twins where only one has PSC? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Does anyone know if there have been any cases involving PSC with identical twins where only one has PSC? Yes, I'm an identical twin and my sister is healthy and I definitely am not. I have had psc since 1973. More recently I have developed diabetes, asthma and several other more minor illnesses. Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Dear Nichole-- Your family history sounds like many others--you've received great advice from others in this group, so I'll be brief. #1) My husband, Rick, is an identical twin. He and his twin have manifested similar health situations; i.e. alopecia (his twin is now completely bald and lost most of his body hair, whereas my husband lost hair in patches, but it has grown back)and gout. However, my husband is the only one of the two who has autoimmune pancreatitis and schlerosing cholangitis....THAT WE KNOW OF! Of course, there is the worry for his twin, but he is mindful of Rick's symptoms and watches for those. He has chosen NOT to be tested at this point. #2) I work as an RN in an endocrinology clinic, where we have many sets of twins; some twins both have Type 1 diabetes, some have only one twin with Type 1. Some families have several children with diabetes, some with just one and no known history of anything autoimmune. As a mom, yes, I worry about my boys (one has lactose intolerance) but we try to be as healthy as we can be---supplements, flax seed oil, omega 3, acidophillus, Lactaid milk. I know you worry about your daughter, too. Sounds like you are a caring mom and wife; I hope you find a practitioner that will go the extra mile to find the answers to your questions! Take care, Tammy, wife of Rick, age 48, AIP w/SC 6/04 > > Does anyone know if there have been any cases involving PSC with > identical twins where only one has PSC? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 I have a double line of ish and Irish alcoholics extending back for generations. None had liver problems, to my knowledge. Other than a few years at university, I have been a life-long teetotaler yet here I am. We talk about PSC as a disease but it's more of a condition defined by symptoms. Causes could be as varied as the people on this list. Personally, I am blaming household cleaners. No one can prove otherwise and I get to avoid chores at home. The same mechanism is probably behind my eldest daughter's fear of the lawnmower. She has always been a shrewd observer of the human condition. Have a good weekend all, Bill BKnott3018@a... wrote: > In a message dated 13/01/05 06:08:36 GMT Standard Time, > nichole_rowland@y... writes: > > > > Does anyone know if there have been any cases involving PSC with > > identical twins where only one has PSC? > > > > Yes, I'm an identical twin and my sister is healthy and I definitely am not. > I have had psc since 1973. More recently I have developed diabetes, asthma and > several other more minor illnesses. > Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 > > Personally, I am blaming household cleaners. > No one can prove otherwise and I get to avoid chores at home. The > same mechanism is probably behind my eldest daughter's fear of the > lawnmower. She has always been a shrewd observer of the human > condition. ....and a chip off the old block, it would seem. ; ) - Gene A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Tammy, Thank you so much for posting this it really makes me feel a lot better! I am sorry I didn't reply sooner. I was flying this week and just got home from Boston. I am sorry that Rick has to deal with all of this but I am glad you are part of the support group. Regards, Nichole > #1) My husband, Rick, is an identical twin. He and his twin have > manifested similar health situations; i.e. alopecia (his twin is now > completely bald and lost most of his body hair, whereas my husband > lost hair in patches, but it has grown back)and gout. However, my > husband is the only one of the two who has autoimmune pancreatitis > and schlerosing cholangitis....THAT WE KNOW OF! Of course, there is > the worry for his twin, but he is mindful of Rick's symptoms and > watches for those. He has chosen NOT to be tested at this point. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Hi Barbara, Thank you for your response. It is nice to know it is not all genetics. I am sorry that you have had PSC for so many years. Regards, Nichole > In a message dated 13/01/05 06:08:36 GMT Standard Time, > nichole_rowland@y... writes: > > > > Does anyone know if there have been any cases involving PSC with > > identical twins where only one has PSC? > > > > Yes, I'm an identical twin and my sister is healthy and I definitely am not. > I have had psc since 1973. More recently I have developed diabetes, asthma and > several other more minor illnesses. > Barbara (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Thanks for the laugh. > > > > Personally, I am blaming household cleaners. > > No one can prove otherwise and I get to avoid chores at home. The > > same mechanism is probably behind my eldest daughter's fear of the > > lawnmower. She has always been a shrewd observer of the human > > condition. > > ...and a chip off the old block, it would seem. ; ) > > - Gene A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 ---- Causes could be as varied as the > people on this list. Personally, I am blaming household cleaners. > No one can prove otherwise and I get to avoid chores at home. The > same mechanism is probably behind my eldest daughter's fear of the > lawnmower. She has always been a shrewd observer of the human > condition. > > > > > > Bill, You are a very funny guy. Personally, I go for the predisposition with an environmental trigger. I can trace my trigger to a sever case of the flu (stomach and intestinal varieties) in August of '84. A week later I was hospitalized for a " inflammed gall bladder. " In August of '93, they took my gall bladder out--no stones just scarred (adhesions all over and through it). Finally, in fall of '00, they found liver disease and UC. But, I will have to think of a more creative trigger mechanism than that. Maybe mine was cooking. I hate cooking. Yeah, that's the ticket. Take care, cheryl in id 46, PSC, UC, etc. Quote Link to comment Share on other sites More sharing options...
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