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Hi everyone, I am so glad I found this website. I am 26 years old and live with Kartagener’s. I’ve always been on meds since birth, and I also have situs inversus. I will gladly answer any questions anyone has. I am so glad I am not the only one.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I am the mother of a 9 year son who has Kartagener Syndrome, T-Cell Immune Deficiency, Underdeveloped Cerrabellum, Speech and Motor Delays, Bronchieatosis… he’s a strong little boy who has been through alot in his short life. He struggles with frequent sinus infections, and pneumonias, high temps… he does his vest treatment twice a day during healthy times and up to 5 times when sick. He also does nasal sprays daily and nebulizers. Looking for new information, people with similar problems for support
I am a mom of newly diagnosed with PCD(Oct. 2006) Girl, aged 16. She was misdiagnosed for many years with bad asthma, sinus, ears and allergies.
I´m 27 yearl old girl with PCD… I´d like to learn more about my condition.
I am a 41 year old with kartengers syndrome and want to learn as much as i can about this condition.
8 year old son has kartagener syndrome
Mom to Gabby who has KS or PCD w/SI. She is 3 yrs. old.
I am 52, live in the San Francisco Bay Area, and have Kartaganers syndrome (i.e. PCD with SI). I am interested in sharing information and support with others who have PCD.
I have pcd, primary cilia dyskinesia, hmmm
what happened to the rest of my post..
i too have borderline t and b cells, immotile cilia,
dx in my 40's...collapsed lung , born with, on
oxygen for 3 weeks, pneumonia at 4 months,
rt middle lobe and left middle lobe removed at
4 yrs and 13 rs..i was born in the 40's , and
penicillin and sulfa were just coming out..
even though i did not have a vest, i was taught
about postural drainage, spent most of my school hears in ENTs, Allergists, lung, pcp office's..
in 1967, i was told to moved to ARizona from
SEattle...i was not going to live long...funny
i move to ARizona and get more diagnosis...s
primary immune deficiency and pcd..i was
tested twice, for cilia dysfunction both tests
came out the same..cilia don't work..
so now i am on ivig, monthly , my fatigue
level is so much better...not as many sinus
surgeries, i get suctioned bye the ent monthly
and suction at home also..use the vest, breathing
nebulizer, and tobi for pseudomonas...i was
tested for CF when i was growing up..
i am on oxygen now...two years ago...i am still
active, i walk in the park now with a "cruiser"
my peak flow is 150...although I worked for
32 years with a peak flow of 200...not sure
how I did that..
www.pcdfoundation.org
for more info
I am in the process of being diagnosed with PCD. I am interested in finding out what other similar symptoms people have with this condition.
My third son Nicholas was diagnosed with Kartagener’s Syndrome at birth. Though he has struggled over the years, he is a healthy, active and happy boy.
My daughter was tested to see if she has PCD. We are waiting on the results from UNC. I want to learn more about PCD and connect with other people and parents of children with PCD.
I am 51 years old with KS and an older sister with KS.
My 9 y.o. son has PCD.
My son (7 yrs old) has DSI and Kartagener’s. I am interested in getting connected with other people who have had to deal with this condition.
I have a son with PCD