This volunteer-run group supports patients and families affected by Primary Ciliary Dyskinesia (PCD) in the UK. Any advice given is from a personal...Read more
PCD & heart problems
Health-12 hours ago
Hi anyone know if PCD has any link with heart problems?
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Baynajariana day ago
Hi I am a college age girl with PCD and Situs Inversus. I have never talked to anyone that has the same disease. There is a lot I would like...
LOOKING FOR FRIENDS WHO HAVE PCD AS WELL
AnjalMehta11 days ago
hey! so i was wondering if anyone would like to be friends who share the same condition as i do i.e pcd sit. we could talk about it and get ...
KayErin19 days ago
Hi my daughter is starting school next week shes 4 and has PCD was diagnosed around 4months old. I have always stuck to a strict physio rout...
Please help me assess my child symptomatically if he has pcd
GowriSivakumara month ago
After having battled for 5 years with my son's condition, iam here to see if I I will be able to find out some information abou...
Worried Mom of 2 yr old boy with PCD
Ebearsmoma month ago
Hi my 2 yr old son has PCD was diagnosed genetically when he was 6 weeks old, he has had growth and weight gain issues as well and has a ent...
Katieamynewbs-952 months ago
Hi I'm 22 and i was diagnosed with PCD and situs inversus as soon as I was born. I was just wondering does anyone suffer with joint pain? I ...
PCD - Do you also feel unusual fatigue and have arthritis symptoms?
SilVale2 months ago
My name is Silvia and I am writing on behalf of my sister who has born with Kartagener syndrome often associated to Primary Ciliary ...
Just saying hi
Helzapopin2 months ago
Wow, I'm amazed to find this site! How nice to meet you all.
I was diagnosed with Kartageners about 25 years ago and used to have physio a...
New way to make new antibiotics---cheaply, too!
shannielars2 months ago
Found this article in another group today:
Scientists stumble across new method of making antibiotics
12 July 2017 Salford, The University of
Sinus surgery and septoplasty
Beek452 months ago
Hi everyone. I am booked in for sinus surgery and septoplasty. I need to know how long recovery is (I have heard 6 weeks!) And how painful i...
62 years old, PCD with SI and polysplenia. Have a 66yo sister PCD/SI, too. Normal sister and brother as well. On oxygen 24/7, currently l...
Can a PCD SIT patient adopt a dog?
AnjalMehta3 months ago
Hey! I know this is very random but i was hoping you could help me with this problem.
I'm planning to adopt a dog and i have PCD SIT i.e a m...
JacquiSmith4 months ago
My son is 3 years old and has situs inversus. When he was tested for pcd at 3 months old the results came back that he had some...
has pet puppy made son's chest worse?
Carolanne19074 months ago
I am new to this website. I am looking for some advice please? My son has PCD and has recently been admitted to hospital d...
Post surgery blues.
Simmilou936 months ago
My mum had sinus surgery a little over two years ago and since has lost most of her smell and taste due to nerve damage so will never regain...
VX-371 Clinical trial
Karlo6 months ago
I'm posting this in case anyone is interested in participating in a clinical trial for developing new treatment. The details are in the link...
shedevil497 months ago
Has any of you had costocondritis I've had it since Xmas I can't do anything cos the pain affects my breathing? If any of you have any hints...
PCD Adult Service in Cumbria?
windle7 months ago
My son is 23 and was diagnosed with PCD at 13. Last year was his best as he was on Azithromycin 3x a week. As soon as he stopped he is h...
Athritic pain and PCD
Iram_sa7 months ago
I'm on prophylactic antibiotics (co-amoxiclav) and have been on them for over two years then take other rescue drugs when an infection fl...
Nasal brush sample still has heavy bacterial load?
Mpmc7 months ago
Just had feedback on the third brush, previous 2 were equivocal for abnormal function after culture..with slightly reduced frequency. What's...
Recessive genetic condition?
toothfairy448 months ago
Hi, Our son Josh was diagnosed with PCD soon after birth. He is now eight years old. He has received excellent multidisciplinary care countr...
shelleymash8 months ago
Does anyone with little ones who are on coamoxiclav suspension regularly, find they have stained teeth?
My poor girl brushes her teeth religi...
shelleymash9 months ago
An interesting article about where we're at with CRISPR. Very exciting stuff.
Travel nebuliser recommendations
Okay, next question- does anyone have a travel nebuliser that they are happy with and would recommend? (for 6 year old, saline only at this...
Hi, I've recently been issued a nebuliser and told to do saline nebuliser once a day when my daughter is ill.
My question is, is there such ...
Is atelectasis a common problem with people who have bronchiectasis and have primary ciliary dyskinesia?
fcfilice9 months ago
I was told by my doctor that I had atelectasis which was observed on a chest x-ray located in the area where I had past pneumonia when I wa...
When do you know when you need to see a doctor?
KayErin10 months ago
So my daughter is 3 and a half she was diagnosed around 4months so i should know what im doing! I was just wondering when you feel you/your ...
Karloa year ago
Hi everyone! I'm new to the forum but not to PCD. I've been diagnosed with PCD as a child, at the age of 13, currently I'm 32 years old now....
PCDWIFEa year ago
Paul's consultant has said the next step is a lung transplant. Has anyone on here had one or know any one that has had one for PCD? He's ...
Have you had your flu jab yet?
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