RE: Digest Number 2118

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Hello Backi, good to see you online again.

Its been a while hasn,t it.

Sounds like you are doing well still.

Are you still doing the camp thing too?

Are you keeping well?

And sorry I cannot remember your male friends name, how is he doing now?

I think last time you wrote he was looking or just begun a new job.

Good to see you still doing positive things.

I keep myself well too, by trying to keep positive in all I do.

Sandy, Q, land AustCarer/ Consumer Representative Central Area, Mental Health Clinical network. "Sec/ Co -ord HBCAG & GEMS. Consumer/ carer rep to FCIMHS Community Consultant on Mental Health /Fraser Coast. Sandy R . "Nothing about us without us" HBCAG " Promoting Excellence in Mental Health"

Date: Thu, 6 Sep 2007 13:41:57 +0000From: bronchiectasis To: bronchiectasis Subject: Digest Number 2118

Bronchiectasis Support Group

Messages In This Digest (2 Messages)

1a.

Hi, Childhood Bronchiectasis or Young Adults...My Intro From: missgoobergirl

1b.

Re: Hi, Childhood Bronchiectasis or Young Adults...My Intro From: Sunniesback55@...

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Messages

1a.

Hi, Childhood Bronchiectasis or Young Adults...My Intro

Posted by: "missgoobergirl" prograf_princess@... missgoobergirl

Thu Sep 6, 2007 1:33 am (PST)

Hi, My name is Becki and I am 29 years old. I have Cystic fibrosis, via Ambry Genetics Lab, and am 3 yrs post lung transplant.I run a non-profit group called YOUNGLUNG Support Services, Inc that both uses an email group and summer camp to provide support services for young people, including young adults, with any chronic lung disease.I have been doing some research online on childhood bronchiectasis and found there is very little on the subject. I also found there is not even one support group specifically for parents of infanct, toddlers, kids, and teens with bronchiectasis. So, I decided to start one called " BronchiectasisKids". I am writing in hopes that if there are any parents of kids with the disorder, they will join the site. That way parents can share their concerns dealing with young kids with the disorder. If you have any teens or young adults with the disorder they are also invited to join YOUNGLUNG, a moderated group for young people with lung disease.I uploaded some files to the site parents can look at, and will add more. I also included a file folder for stories so that parents can share their child's story. I hope the site soon becomes active ! ! ! The addy is :http://health.groups.yahoo.com/group/BronchiectasisKids/ http://health.groups.yahoo.com/group/YOUNGLUNG/If anyone has any questions about lung transplant please feel free to ask. & #65279; Sincerely, R. SnyderDirector29 year old w/ CF, Chronic Pancreatitis, Diabetes, Double Lung Transplant '04, GJ TubeYOUNGLUNG Suppport Services, Inc.1721 Anniston Rd#112ville, Florida 32246www.younglung.org

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1b.

Re: Hi, Childhood Bronchiectasis or Young Adults...My Intro

Posted by: "Sunniesback55@..." Sunniesback55@...

Thu Sep 6, 2007 3:08 am (PST)

Hi ..It's nice to meet you. Congrats on your tx and your 3 yr success w/it.I have Alpha1 Antitrypsin Deficiency..a close second to CF except that w/A1ATD, the liver is the culprit, since it retains an enzyme ( antitrypsin). For those of us adults who manage to survive liver symptoms and tx upon birth, we develop lung disease from this disorder. I need a lung tx. Our Alpha Kids need liver tx..I have a page on myspace if you'd be interested in the links to our support group..also some pictures of some of our alpha kids.._www.myspace.com/sunniesandie_ (http://www.myspace.com/sunniesandie) There's another website ..you can google it..called Second Wind..it could also be helpful as well as useful.Good luck to you in you endeavor to help the kids..SandieA1ATD PrimaryBronchiectasis SecondaryMDNever look down on SomeoneUnless you're willing to help them Up************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

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