Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , I was diagnosed a little over a year ago and I'm now 25. I'm still asymptomatic for the most part, so don't really know how to advise. I stopped drinking and started on high dose ursidiol. My liver enzymes are now back to normal (they were extremely high at first). I'm still trying to let it all sink in...and trying to figure out what the disease even is...All I can say is that I can empathize with you being young and dealing with the thoughts of having a life altering disease. It's pretty strange, and sometimes I wonder if I should even worry at all until something begins to happen. I almost feel like ignorance is bliss right now, but don't know how wise that is? Anyway, please let me know if you have any additional questions based on the information I've provided. Have a great day- Sally Age ??? Hi all,I'm new but unfortunatly not to this disease. I've had PSC and UC since Jan 2002 (I was 18) has anyone else been this age when first diagnosed? Hope to hear from someone soon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , I was diagnosed a little over a year ago and I'm now 25. I'm still asymptomatic for the most part, so don't really know how to advise. I stopped drinking and started on high dose ursidiol. My liver enzymes are now back to normal (they were extremely high at first). I'm still trying to let it all sink in...and trying to figure out what the disease even is...All I can say is that I can empathize with you being young and dealing with the thoughts of having a life altering disease. It's pretty strange, and sometimes I wonder if I should even worry at all until something begins to happen. I almost feel like ignorance is bliss right now, but don't know how wise that is? Anyway, please let me know if you have any additional questions based on the information I've provided. Have a great day- Sally Age ??? Hi all,I'm new but unfortunatly not to this disease. I've had PSC and UC since Jan 2002 (I was 18) has anyone else been this age when first diagnosed? Hope to hear from someone soon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , I was diagnosed a little over a year ago and I'm now 25. I'm still asymptomatic for the most part, so don't really know how to advise. I stopped drinking and started on high dose ursidiol. My liver enzymes are now back to normal (they were extremely high at first). I'm still trying to let it all sink in...and trying to figure out what the disease even is...All I can say is that I can empathize with you being young and dealing with the thoughts of having a life altering disease. It's pretty strange, and sometimes I wonder if I should even worry at all until something begins to happen. I almost feel like ignorance is bliss right now, but don't know how wise that is? Anyway, please let me know if you have any additional questions based on the information I've provided. Have a great day- Sally Age ??? Hi all,I'm new but unfortunatly not to this disease. I've had PSC and UC since Jan 2002 (I was 18) has anyone else been this age when first diagnosed? Hope to hear from someone soon __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , Welcome to the group, I am also new here and I was diagnosed about 5 months ago but the symptoms started a few years ago, when I was about 19-20. Today I'm 23 years old. It sucks getting it so soon, but this group is really helpful and supportive. Hope you feel well. . > > Hi all, > I'm new but unfortunatly not to this disease. I've had PSC and UC since > Jan 2002 (I was 18) has anyone else been this age when first diagnosed? > Hope to hear from someone soon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , Welcome to the group, I am also new here and I was diagnosed about 5 months ago but the symptoms started a few years ago, when I was about 19-20. Today I'm 23 years old. It sucks getting it so soon, but this group is really helpful and supportive. Hope you feel well. . > > Hi all, > I'm new but unfortunatly not to this disease. I've had PSC and UC since > Jan 2002 (I was 18) has anyone else been this age when first diagnosed? > Hope to hear from someone soon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Hi , Welcome to the group, I am also new here and I was diagnosed about 5 months ago but the symptoms started a few years ago, when I was about 19-20. Today I'm 23 years old. It sucks getting it so soon, but this group is really helpful and supportive. Hope you feel well. . > > Hi all, > I'm new but unfortunatly not to this disease. I've had PSC and UC since > Jan 2002 (I was 18) has anyone else been this age when first diagnosed? > Hope to hear from someone soon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Welcome , There are many in this group that got PSC young and some young mothers who's kids got it much younger. I'm not one of them, I was first diagnosed when I was 33 and that was 19 years ago. So take hope you can still have a long life with PSC. Ian (52) PSC 89 Hi all,I'm new but unfortunatly not to this disease. I've had PSC and UC since Jan 2002 (I was 18) has anyone else been this age when first diagnosed? Hope to hear from someone soon -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 Welcome , There are many in this group that got PSC young and some young mothers who's kids got it much younger. I'm not one of them, I was first diagnosed when I was 33 and that was 19 years ago. So take hope you can still have a long life with PSC. Ian (52) PSC 89 Hi all,I'm new but unfortunatly not to this disease. I've had PSC and UC since Jan 2002 (I was 18) has anyone else been this age when first diagnosed? Hope to hear from someone soon -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 , Hi! I was reading your post and saw that you were interested in speaking to people who were diagnosed around your age. Have you heard about the PSC Partners site on Facebook? There are several members on there who I know were diagnosed in their late teens or early 20s who I'm sure would be happy to share experiences with you. Basically, the Facebook site was started by my friend and me to have a site where PSCers in their 20s/30s (or around that age) could talk about things that concerned us, share stories, ask and answer questions, etc. It's a great group of people and we'd love to have you join. If you don't already have a Facebook account, simply go to www.Facebook.com and sign up for a free account. It's simple and easy. Once there, just type in PSC Partners in the Groups searchbox and it should take you right to us. You can also contact me, Sandi Pearlman, for help if you need it or if you'd just like to chat. You also may want to consider coming to our Chicago conference this upcoming May 1-3rd. It's a great place to talk to people face to face and see how they're dealing with PSC and share stories. Hope you're doing well! Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 , Hi! I was reading your post and saw that you were interested in speaking to people who were diagnosed around your age. Have you heard about the PSC Partners site on Facebook? There are several members on there who I know were diagnosed in their late teens or early 20s who I'm sure would be happy to share experiences with you. Basically, the Facebook site was started by my friend and me to have a site where PSCers in their 20s/30s (or around that age) could talk about things that concerned us, share stories, ask and answer questions, etc. It's a great group of people and we'd love to have you join. If you don't already have a Facebook account, simply go to www.Facebook.com and sign up for a free account. It's simple and easy. Once there, just type in PSC Partners in the Groups searchbox and it should take you right to us. You can also contact me, Sandi Pearlman, for help if you need it or if you'd just like to chat. You also may want to consider coming to our Chicago conference this upcoming May 1-3rd. It's a great place to talk to people face to face and see how they're dealing with PSC and share stories. Hope you're doing well! Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 , Hi! I was reading your post and saw that you were interested in speaking to people who were diagnosed around your age. Have you heard about the PSC Partners site on Facebook? There are several members on there who I know were diagnosed in their late teens or early 20s who I'm sure would be happy to share experiences with you. Basically, the Facebook site was started by my friend and me to have a site where PSCers in their 20s/30s (or around that age) could talk about things that concerned us, share stories, ask and answer questions, etc. It's a great group of people and we'd love to have you join. If you don't already have a Facebook account, simply go to www.Facebook.com and sign up for a free account. It's simple and easy. Once there, just type in PSC Partners in the Groups searchbox and it should take you right to us. You can also contact me, Sandi Pearlman, for help if you need it or if you'd just like to chat. You also may want to consider coming to our Chicago conference this upcoming May 1-3rd. It's a great place to talk to people face to face and see how they're dealing with PSC and share stories. Hope you're doing well! Sandi __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 I was diagnosed at 22, but had been having symptoms for a couple years already, so I probably started getting sick around 20. I'm 38 now, so I've managed to do pretty well for quite a while with it. I had a transplant last year and feel much better now although I've had a few hitches due to the immune suppression. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 I was diagnosed at 22, but had been having symptoms for a couple years already, so I probably started getting sick around 20. I'm 38 now, so I've managed to do pretty well for quite a while with it. I had a transplant last year and feel much better now although I've had a few hitches due to the immune suppression. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 I was diagnosed at 22, but had been having symptoms for a couple years already, so I probably started getting sick around 20. I'm 38 now, so I've managed to do pretty well for quite a while with it. I had a transplant last year and feel much better now although I've had a few hitches due to the immune suppression. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 My husband was diagnosed around 26 or 27 and was a single dad to a brand new baby. He's 33 (34 in December ) and was fairly asymptomatic until about a year and a half ago. He's not on the transplant list yet but likely will be soon. > > Hi all, > I'm new but unfortunatly not to this disease. I've had PSC and UC since > Jan 2002 (I was 18) has anyone else been this age when first diagnosed? > Hope to hear from someone soon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2008 Report Share Posted October 20, 2008 My husband was diagnosed around 26 or 27 and was a single dad to a brand new baby. He's 33 (34 in December ) and was fairly asymptomatic until about a year and a half ago. He's not on the transplant list yet but likely will be soon. > > Hi all, > I'm new but unfortunatly not to this disease. I've had PSC and UC since > Jan 2002 (I was 18) has anyone else been this age when first diagnosed? > Hope to hear from someone soon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Hi athan, Bobbi, Sally, Ian, , Sandi, I suppose my biggest question is:Is it a general rule that all people who get PSC so young have a transplant? Also what meds are you all on? I know i've had this for 6 years now but I still feel so lost and dont really know what the future holds, what symptoms I should be looking out for and whats the best medication to combat my symptoms (esp pain and fatigue). It doesnt help that each time I see the doc or one of his registrars I dont have the bottle to ask that really nitty gritty questions. Thanks Rach > > I was diagnosed at 22, but had been having symptoms for a couple years > already, so I probably started getting sick around 20. I'm 38 now, so > I've managed to do pretty well for quite a while with it. I had a > transplant last year and feel much better now although I've had a few > hitches due to the immune suppression. > > athan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 Hi , As I said I was diagnosed only a few months ago, I can say that I am totally lost as well, and I generally feel really bad so I am afraid to think what's waiting for me in the next 6 years. All I'm taking right now is Ursolit and Omepradex (some drug that's supposed to help me with GERD, but it doesn't) I check this group every single day in hope to find someone putting a post like: " I found a cure " or something like that. So I cannot advice you at all, I need advice myself, I guess. What I can tell you is that getting as much information as possible is really helpful. And try to find a doctor that you really trust, so you can sleep well and know that you are prepared and covered for any possible bad scenario. People here take a lot of food supplements that appear to help them, I'm trying to find what helps me. Ask poeple and try.. Best regards > > > > I was diagnosed at 22, but had been having symptoms for a couple > years > > already, so I probably started getting sick around 20. I'm 38 now, > so > > I've managed to do pretty well for quite a while with it. I had a > > transplant last year and feel much better now although I've had a few > > hitches due to the immune suppression. > > > > athan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2008 Report Share Posted October 23, 2008 rach8684 wrote: > I suppose my biggest question is:Is it a general rule that all people > who get PSC so young have a transplant? I'm not sure I'd say it's the general rule, but it is probably generally true that the younger you are at diagnosis, the more likely it is that you'll need a transplant. Of course that also means that you'll be likely to have more good years to live after the transplant, and that you'll be more likely to survive it in the first place (younger people tend to do better with transplants). Having lived through the disease and come through transplant, I'd say that the best thing you can do for yourself is to live a generally healthy lifestyle... exercise, eat a balanced, healthy diet, get enough rest, and stay involved in life, friends, family etc. as much as you possibly can. I know all that is harder when you're sick but it's all the more important, and it will not only help improve your chances of getting through this, but it will make life better even while you're sick. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi, Firstly just wanted to say my thoughts and prayers are with Dora and her Daughter and all those parents dealing with the heartbreak of a child with this disease. I have a daughter she's 3 and the mere thought of her getting this disease brings me out in a cold sweat. Just as a thought does anyone here have PSC and their children then developed the disease?? (god i hope not) As for me I just try and take things slowly. I have written to my doc to ask about anti itch meds that will touch wood make day to day a little easier. I'm also considering trying some of the various supplements that some of you take to see if they'll help too. Can anyone give me an idea of what to try? Thanks all, ( dx UC & PSC 2002, Canterbury UK) > > I suppose my biggest question is:Is it a general rule that all people > > who get PSC so young have a transplant? > I'm not sure I'd say it's the general rule, but it is probably generally > true that the younger you are at diagnosis, the more likely it is that > you'll need a transplant. Of course that also means that you'll be > likely to have more good years to live after the transplant, and that > you'll be more likely to survive it in the first place (younger people > tend to do better with transplants). > > Having lived through the disease and come through transplant, I'd say > that the best thing you can do for yourself is to live a generally > healthy lifestyle... exercise, eat a balanced, healthy diet, get enough > rest, and stay involved in life, friends, family etc. as much as you > possibly can. I know all that is harder when you're sick but it's all > the more important, and it will not only help improve your chances of > getting through this, but it will make life better even while you're sick. > > athan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hi, Firstly just wanted to say my thoughts and prayers are with Dora and her Daughter and all those parents dealing with the heartbreak of a child with this disease. I have a daughter she's 3 and the mere thought of her getting this disease brings me out in a cold sweat. Just as a thought does anyone here have PSC and their children then developed the disease?? (god i hope not) As for me I just try and take things slowly. I have written to my doc to ask about anti itch meds that will touch wood make day to day a little easier. I'm also considering trying some of the various supplements that some of you take to see if they'll help too. Can anyone give me an idea of what to try? Thanks all, ( dx UC & PSC 2002, Canterbury UK) > > I suppose my biggest question is:Is it a general rule that all people > > who get PSC so young have a transplant? > I'm not sure I'd say it's the general rule, but it is probably generally > true that the younger you are at diagnosis, the more likely it is that > you'll need a transplant. Of course that also means that you'll be > likely to have more good years to live after the transplant, and that > you'll be more likely to survive it in the first place (younger people > tend to do better with transplants). > > Having lived through the disease and come through transplant, I'd say > that the best thing you can do for yourself is to live a generally > healthy lifestyle... exercise, eat a balanced, healthy diet, get enough > rest, and stay involved in life, friends, family etc. as much as you > possibly can. I know all that is harder when you're sick but it's all > the more important, and it will not only help improve your chances of > getting through this, but it will make life better even while you're sick. > > athan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 , I do not know of anyone on this forum whose child also has PSC. I once asked my hepatologist about this and he told me that the statistical chance of my children getting PSC is greater than of the normal population. If I remember well he said there is a four times greater chance. Having said that, that doesn't mean a lot in real terms. Your children have a 0.08% chance that they will develop PSC instead of a 0.02% (20/100000) chance. For girls it is even less, 0.025% instead of 0.0063% (6.3/100000. In other words, the odds are greater but still rather slim. I take ADEK vitamins and Omega 3. I can give you the brand names, but I don't think you can get them in the UK. Regards, Chaim Boermeester, Israel > > Hi, > Firstly just wanted to say my thoughts and prayers are with Dora and > her Daughter and all those parents dealing with the heartbreak of a > child with this disease. I have a daughter she's 3 and the mere > thought of her getting this disease brings me out in a cold sweat. > Just as a thought does anyone here have PSC and their children then > developed the disease?? (god i hope not) > As for me I just try and take things slowly. I have written to my doc > to ask about anti itch meds that will touch wood make day to day a > little easier. I'm also considering trying some of the various > supplements that some of you take to see if they'll help too. Can > anyone give me an idea of what to try? > Thanks all, > ( dx UC & PSC 2002, Canterbury UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 , I do not know of anyone on this forum whose child also has PSC. I once asked my hepatologist about this and he told me that the statistical chance of my children getting PSC is greater than of the normal population. If I remember well he said there is a four times greater chance. Having said that, that doesn't mean a lot in real terms. Your children have a 0.08% chance that they will develop PSC instead of a 0.02% (20/100000) chance. For girls it is even less, 0.025% instead of 0.0063% (6.3/100000. In other words, the odds are greater but still rather slim. I take ADEK vitamins and Omega 3. I can give you the brand names, but I don't think you can get them in the UK. Regards, Chaim Boermeester, Israel > > Hi, > Firstly just wanted to say my thoughts and prayers are with Dora and > her Daughter and all those parents dealing with the heartbreak of a > child with this disease. I have a daughter she's 3 and the mere > thought of her getting this disease brings me out in a cold sweat. > Just as a thought does anyone here have PSC and their children then > developed the disease?? (god i hope not) > As for me I just try and take things slowly. I have written to my doc > to ask about anti itch meds that will touch wood make day to day a > little easier. I'm also considering trying some of the various > supplements that some of you take to see if they'll help too. Can > anyone give me an idea of what to try? > Thanks all, > ( dx UC & PSC 2002, Canterbury UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 , I do not know of anyone on this forum whose child also has PSC. I once asked my hepatologist about this and he told me that the statistical chance of my children getting PSC is greater than of the normal population. If I remember well he said there is a four times greater chance. Having said that, that doesn't mean a lot in real terms. Your children have a 0.08% chance that they will develop PSC instead of a 0.02% (20/100000) chance. For girls it is even less, 0.025% instead of 0.0063% (6.3/100000. In other words, the odds are greater but still rather slim. I take ADEK vitamins and Omega 3. I can give you the brand names, but I don't think you can get them in the UK. Regards, Chaim Boermeester, Israel > > Hi, > Firstly just wanted to say my thoughts and prayers are with Dora and > her Daughter and all those parents dealing with the heartbreak of a > child with this disease. I have a daughter she's 3 and the mere > thought of her getting this disease brings me out in a cold sweat. > Just as a thought does anyone here have PSC and their children then > developed the disease?? (god i hope not) > As for me I just try and take things slowly. I have written to my doc > to ask about anti itch meds that will touch wood make day to day a > little easier. I'm also considering trying some of the various > supplements that some of you take to see if they'll help too. Can > anyone give me an idea of what to try? > Thanks all, > ( dx UC & PSC 2002, Canterbury UK) Quote Link to comment Share on other sites More sharing options...
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