RE: Re: I'm freaking out! Someone help me, please....

[Guest guest]

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You will receive lots of responses tomorrow. You can ask all the questions you want and you can read the prior posts. Also the PSC Moms site is a great place to hear from "the moms", although many of us access both groups. pscmoms - I think you sign up via the main PSC site, just like you did for this one.

As a fellow "mom", I truly remember those first few months - frightened, overwhelmed, depressed, sad, etc! I think I read every post that was sent on this website! My son, was diagnosed with both UC and PSC in 2-06, after being very ill for 2 months. Looking back, he had symptoms for 8 years prior (including elevated LFT - liver function tests, found in routine follow-up for his juvenile rheumatoid arthritis). When my husband found this group, I learned so much. The PSC Partners Annual Conference was 3 weeks after I learned about the group - I was determined to fly to Pittsburgh and it was one of the best "spur of the moment" decisions I have ever made! I met so many of the caring, knowledgeable people that you will come to know on this website AND got to listen to a group of excellent physicians and medical staff speak about PSC. Information about this year's conference is already posted on the PSC Partners site - if at all possible, if you can join us in Chicago, you'll have a great experience.

I'm going to jump way ahead here, but I know what happened to me and I've seen the transition that other's make - learning more about PSC, having support of others is so helpful. It took me awhile, but I just "moved forward". As a family, we deal with the "ups and downs". My son, who is now 18, is amazing. He copes with the crummy days, he has responsibility for medications, doctor appointments, etc that many adults can't figure out... and he has such a great sense of compassion and understanding for others. The young folks that have PSC, both the kids, teens and young adults are amazing people. Many on this site have the strong motto of Living Life to the Fullest!

I also so appreciate the PSC Partners focus on increasing PSC research to find a cure and treatments. I am so supportive of this - what better way for me to focus my energy and my charitable donations than to efforts focused on improving the lives of those with PSC. It has actually been helpful to me to participate in our research fundraising events.

Take care,

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06, JRA 98)

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