VX-371 Clinical trial
Karlo2 years 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...
shedevil492 years 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?
windle2 years 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_sa2 years 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?
Mpmc2 years 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?
toothfairy442 years 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...
shelleymash2 years ago
Does anyone with little ones who are on coamoxiclav suspension regularly, find they have stained teeth?
My poor girl brushes her teeth religi...
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?
fcfilice2 years 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?
KayErin2 years 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 ...
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....
PCDWIFE2 years 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 ...
PCDmama2 years ago
My 3 year old son's doctor is recommending sinus surgery to open up the drainage passages for more efficient draining. Have any of you with...
Having a tough time.
I'm really struggling at the moment, my husband has taken a turn for the worse with his condition and has been on constant IV's in the ho...
dmacheta12 years ago
Hi would appreciate advice on hypertonic nebulisers. Is it something that is routinely prescribed in adult patients with PCD? I have been on...
Ill health retirement
I've just signed up and looking for some advice and help. I've been teaching for 17 years now (I know some may say risky with scho...
Hi I am 52 years old finally diagnosed with PCD after persisting for 26 years to get a diagnosis!
I have been colonised with pseudomonnas fo...
Physio for 3yr old
My daughter was diagnosed with PCD at around 5months but as shes getting older im finding physio harder she either doesnt want to do it or t...
Gastrointestinal problems PCD
Grace96142 years ago
I am currently awaiting genetic results for PCD. I had neonatal distress and I am under the Rotal Brompton. I had a lung op at 18 and si...
Pcd and cystic fybrosis
Chrisjudy2 years ago
Hi is it possible that my child could have pcd and cystic fibroses becouse his doctor did genetic tests on him and this is what she said is ...
16 year old can't accept his diagnosis
Caz32832 years ago
My 16year old son was diagnosed with PCD 3 weeks ago. He is finding it extremely hard to accep it. In fact he says he just doesn't want to. ...
Can you do some PCD research in Southampton before end of September?
fionac662 years ago
Can you help with some research into a new portable nasal nitric oxide analyser to screen for PCD. Southampon Hospital are looking for adult...
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Travel Costs to See a Specialist
hannahjames2 years ago
I am very fortunate in that I get to see a specialist once a year but I live in Cornwall and the specialist is in London. It costs me £130 i...
Recurring Ear Infections with Ear Tubes
Paisley552 years ago
This is my first post and I actually live in the United States not the UK. I am posting here because there seems to be more s...
Heat abroad effects someone with PCD ?
Emmabbop2 years ago
We have recently been on holiday to Portugal with our boys. One of whom has PCD.
The weather has been very hot but we are every careful as h...
Luci812 years ago
Hi just wondering if your child has seizure when hv fever due to infection? my daughter ( 28 mths has situs inversus and pcd) has had 2 febr...
PCD life expectancy
Tania1232 years ago
My husband who is 30 years old, has just been diagnosed with PCD along with situs inversus.
I am live in NY and am still trying to fin...
UK Life Insurance
Emma_832 years ago
Have just bought a house in the UK and have been refused life insurance by one procider. Broker is looking around for another but th...
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