Massachusetts Support

[positivethoughts03]

Hello Everyone

I am curious to know who is near me in the south of Boston MA area. Looking for support as I was diagnosed a month ago and still learning about PBC (I have AIH as well). I feel a bit lonely and would love some local support. If anyone knows how I should go about finding local PBCers, I would appreciate it!

[Ree1321]

Hi I'm not 100% sure but I think you have to look up on the internet liver foundation and maybe email them or call and I think they can help you find a support group meeting in your area. Good luck and I hope you find the support you need.

[Ree1321]

Hi I checked, look up American liver foundation good luck.

[positivethoughts03 in reply to Ree1321]

Ree1321 Thanks so much for replying! I do some research but in the meantime, everyone on here is amazing too! Have a great rest of your day!

[EileenUSA]

liverfoundation.org/event/a...

Hi- American liver Foundation has a New England division.

I see that have a PBC event this coming Saturday in a suburb of Boston. Check out the link above.

Even if you don’t make that- contact them about local in person support options. All the best to you!

[positivethoughts03]

Thank you so much for responding Eileen! I will try to get to it and reach out as well.

[EileenUSA in reply to positivethoughts03]

Oh so glad you might be able to make the in person presentation. You'll get good current PBC medical info and you'll meet others who have PBC!

I'm 3 years in with dx. You are new to it.. but we have ALL been where you are. As time goes and you get connected with good medical support you will adjust.. we all have our ups and downs. This Health Unlocked site, sponsored by the PBC Foundation UK is a great site for PBC info. The PBC Foundation is free to join and they have tons of resources. Check them out!

There is an American liver Foundation Facebook support page.. lots of folks post there etc..

Personally I find this Health Unlocked lay out easier to search and find posts on any PBC topic--

on the Facebook layout I find it too "time sucking" to be scrolling through lots of tangential reply pages and reposts...

For me-- it just seems harder to have an in depth discussion on topic as each hour someone else posts a new subject and then "older" discussions that could be super important get buried further further down..

that being said.. I'm sure others find the FB pages supportive helpful etc.

I'm glad we have the choices.

Also... it's interesting how the U.K. liver specialists have seemed to be 1 step ahead of USA ..

anyway, don't want to get too far off topic. Wish you all the best. Keep us posted on how you're doing. We are a good group of people here!

[positivethoughts03]

Eileen, such great info thanks for sharing! Yes I am only in about a month long of my dx so I do have a long ways to go...as all of us do.

I cleared my schedule on Saturday to go as I am eager to get as much info as possible. Not sure where you are from but will you be attending the event Saturday? If yes, I'd love to say hello.

I am in agreement regarding the annoyances of Facebook. I'm to a fan of it and don't like to get sucked into it. Who has time for that?!?

I got that same impression about the UK being a bit ahead of the US. I saw somewhere there is a large percent of pbc patients in Europe/UK combined than anywhere in the world so perhaps that is why.

Wish you the very best too. Positive thoughts for the future!

[EileenUSA]

Hi,

Glad you will get to that event outside of Boston. I am betting you will feel less anxious about PBC dx afterwards. There really is some great research and new meds in clinical trials that are showing good results.

But it is still normal to have a time of adjustment after getting a dx like PBC.

So give yourself time... be gentle and do what you need to do for self care.

3 years in I still have times where I'm bummed out by the fatigue and frustrated when I have to cancel fun things... but I treasure the times I feel ok and I am so appreciative of good things- taking nothing for granted.

I'm in Chicago btw. Keep sharing with the group here.. great people!

[positivethoughts03]

Thanks Eileen and just corresponding this little bit with you has made a world of difference. I think the worst part of a new dx such as this is feeling all alone. So, having the support is key. I know it will be ok and I will need to take care of my fragile liver...

All the best to you and thanks again for sharing your experience with me!