I have PCD and am infected with a couple of bugs so it would be nice to be in touch with others and see what they
are getting treated with.
If any of you live in the Southwest, there will be a first
for pcd meeting at Phx Library at 10am to noon
june 2, Satr.
www.pcdfoundation.org
Nothing on the other coast? I’m in florida.
-----Original Message-----
From: betts [mailto:kartagener-cpt2282@lists.careplace.com]
Sent: Wednesday, April 25, 2007 10:11 PM
To: Mercier, Rita L.
Subject: Re: [kartagener] Kartagener Syndrome Member Introductions
i am 29 years old single male with kartagener syndrome and situs inversus totalis"total inversion in sites of the viscera".i want to learn more about ways to help hypofertile males with kartagener.i want to connect with any doctor who can provide me with useful information.also any female who dose not mind marry me with such a case.
Hi all! I’m new to the group and just wanted to introduce myself briefly. My name is Kristy and I have Kartagener’s syndrome. I am 25 and currently live in Indiana.
I would like to learn more about pcd I have a 3 year old daughter with the condition any information would be helpful thanks
Husband has Kartagener’s and Primary Cilia Dyskensia
uk guy here… 32yrs old… KS and PCD… cope with it… physio is my weak weak spot…
My 3 year old son Alexander was born with Situs Inversus and diagnosed with PCD at age 2, we suspected he had PCD at birth but I was told they couldnt do the biopsy until he was older to get a better look at his cilia.
I have a 8yr old daughter with PCD/Kartagener Syndrome.
Hi, my name is Rosemary. I’m a 50 yr. old with Kartageners and pcd. I’ve never met a soul like myself, it would be nice to meet someone like me. I’ve read quite a bit about the disease like most of you I’m sure., especially on the net.
Hi everyone, has been a long time since I posted. Sandi from NH. Daughter CJ 13 KS ,CP It’s been a long winter CJ was sick many times, but right now is doing well. Lynne, CJ said to tell you howdy!!! Tomas we will always be thinking of you ! Sandi NH mom of CJ 13 ks/cp
Diagnosed with KS when I was twelve, nowadays leading a “normal life”.
Hey! I just learned about this community and I think I can learn from if not contribute to knowledge about this disease. I am a respiratory therapist, and have been for 14 years and I have not come across very many, if anyone with this disorder. I’d just like to get in touch with others who have PCD and Kartagener’s Syndrome to see what their life has been like, because mine has been full of a LOT of issues and problems, but also a lot of joy. I’m lucky to be alive.
Okay everyone with KS…Have I got a story for YOU!! LOL I’m new to this “community” and happy to be here. I’ve already learned some things from your posts. THANK YOU!! Hopefully my “story” will be helpful to some of you. It’s a rough road we travel, no one knows that better than we do! Keep fighting, cuz you’re not dead yet!
I have 3 little girls ages 6, 3, and 9 months. Kaylin 6 has PCD, Hailey 3 is healthy as can be, and Lindsey 9 months has PCD and SI.
Hey smkhl, What kind of questions do you have about SI and PCD? I’m 33 years old and have lived with this and other diagnosis all my life. It’s always encouraging to me to see people who are older that have these disorders, because it gives me some perspective. I know a reasonable amount about these things not just because I have it, but also because I’m a RT. I’m interested in what questions you have about it.
Hi I am mom to Maya, 2 years old. Diagnosed (unofficially) at 2 days old with PCD and Situs inversus. We are pretty lucky as she has been healthy. I want to connect with other parents of kids with KS so see their experience and share.
Hi. My son, Hamaad, has multiple health issues.Among them one is Kartagener syndrome, so I need to join this community. Thank You.
Mom of a 7 year old with KS