Re: Welcome Puneet

[Guest guest]

Welcome to the group Puneet.You are in really good hands with Dr. Lindor. Many in our group have seen him as a patient or have heard him talk about PSC at our PSC Partners Seeking a Cure conference. He will make sure that you are doing the right things and taking the right amount of medication.You can read our past newsletters and the issue that covers the April 06 conference has an article on Dr. Lindor's talk.Partners web site is: www.pscpartners.org and then there is a link to the newsletters.If at all possible please come to our next conference this April 13-15 in Denver,CO.  Dr. Lindor won't be speaking this year but other great experts will be. You can also access the agenda on our site.The great thing is that this is a conference for patients and caregivers with question and answer sessions with the experts and also time for PSC patients to talk to each other and in groups about their disease and how they manage all aspects of things. As the mother of a son with PSC , I can tell you that your wife will find it really helpful.As far as telling your parents, of course they must know that this disease has a serious side so that they can be supportive. My husband and I were in their shoes, freaked out about our son's UC and never dreaming it could get worse. Look at our brochure on line and get some facts so that when you talk to them you can answer their questions. Assure them that you have good Dr's and that you will stay in close contact with them. Tell them that everyone's PSC progresses differently. You mention that you hope researchers can find an effective treatment soon. PSC Partners Seeking a Cure is working to help make that happen.You can read more on this in our last newsletter.Welcome, Puneet,Lee mother of Bill 24 PSC/UC 04 j-pouch 06/05Hello Everyone,I just wanted to introduce myself and was hoping to get some suggestions. I am a 30 yr old student in Chicago. I just got diagnosed with PSC. I was diagnosed with UC middle of last year.  Wife and I are going to Mayo to see Dr Lindor to seek a second opinion. Not that we think he will say that I have been misdiagnosed but just to see what he has to say about management and prognosis. This has come as quite a shock to me - from feeling perfectly healthy to being told that I have a progressive condition. How did you guys manage the psychological aspects? I have been feeling very down - probably depressed. Wife is handling it much better and has been trying to cheer me up. I know whatever the outcome, feeling depressed is not the right thing to do.The other thing I wanted opinions about is how should I break this to my parents. I haven't told them about this yet. They are in India, already freaked out about my UC.Thanks for all the help. You have been a great source of information for us. Hope the researchers can find an effective treatment for this soon.Puneet30 yrs, UC dx 2006, PSC dx 2007