Hope43215 days ago
Has anyone ever tried these? What were the results if any?
GwenVG19 days ago
My aunt was recently sick and I caught her cold. I can’t breathe out of my nose and can definitely tell I have a fever. I cannot sleep for t...
Chrissie8223 days ago
I have just received my letter about claiming PIP, I have always received disability benefit, have other people had success with clai...
GwenVG24 days ago
I’ve been having constant sternum pain for the past few months. I have acid reflux but this doesn’t feel like that. My sternum cracks a lot ...
KellyNeal2 months ago
I have brought my daughter to Loughborough. I believe I heard there was a local PCD clinic. I’m interested to hear from anyone local, which...
Ciliary dyskinesia? Allergies? Who knows?!?!
Sstevens842 months ago
I am a mom of 20 month old twins. Focusing on Baby B. Baby B was born c section and immediately had respiratory issue and 16 days in NICU. O...
BessH2 months ago
Does anyone have experience of mouthbreathing? My 8 year old mouthbreaths and always has done. Since her pcd diagnosis and our awareness of ...
Has anyone used halo therapy as a form of preventative care? My daughter has been using sodium chloride through her nebulizer for many year...
GwenVG2 months ago
My last post was about my school, and now this is just an update.
Honestly nothing has changed and I fear that nothing will. My mother is fi...
PCD without cough?
mwinger3 months ago
Does anyone have PCD without breathing issues or a persistent cough? My son has had sinus issues since he was born but has never been diagno...
Pseudomonas since before Christmas
Luci813 months ago
My daughter ( she'll be 4 tomorrow) had sputum collected just before Christmas last year and came back she had pseudomonas. She ...
Hope43213 months ago
Just wondering has anyone come across natural remedies that actually help clear chest out?
Apple cider vinegar ( works very ...
C-section & coughing
Emma_823 months ago
Just pondering the above. I'm not due until July but was thinking about birth the other day and wondered if anyone here who's had a baby has...
Conceiving without ivf?
Hello I’m new here ! I have never spoken to anyone with PCD before and its just been so amazing reading all the stories.
I myself have PCD ....
Unwilling Staff and Principle
GwenVG3 months ago
I have a 504 plan and I’m a junior in high school. I’ve had one since 7th grade because I’m absent a lot. Not only do i have PCD but I have ...
PCD and IVF Funding
Freddo_84 months ago
I was hoping to get some advice from anyone that might be or have been in a similar situation to us please. I’m 29 and my husband is 3...
Marieduns4 months ago
Hi. My son got the cilia biopsy last week to test for PCD. It was very traumatic for him ( and me) the firt time was bad enough but he had t...
Bronchoscopy ... anyone had one?
Helzapopin4 months ago
I have just had a call from the chest clinic at my local hospital wanting me to go for a bronchoscopy next week. I’m really nervous a...
Sinus Infection Won’t Go Away!
GwenVG4 months ago
I’ve been battling a sinus infection for the past 2 weeks and it won’t go away. I called my doctor and he prescribed me 14 days of augmentin...
New to the forum.
aishatu4 months ago
Hello everyone. I am new to the forum although my daughter was diagnosed with PCD around 5 years ago. It is only now that I am finding I nee...
Heath + Tech + PCD
N1235 months ago
I hope everyone is keeping well
I'm interested in technologies that fellow PCDers are using to keep well or manage their conditi...
2 Replies1 Like
Emma_826 months ago
We recently had a bit of shock and found out we are expecting a baby. It's very early days and we have an early scan booked next week as I'm...
12 Replies1 Like
Living with PCD
GwenVG6 months ago
Hi, My Names Gwen and I'm 16 years old. And 6 years ago I was diagnosed with Secondary Ciliary Dyskinesia.
My whole childhood I couldn't do ...
Our baby has PCD
Jpeas7 months ago
Are there any parents on here with babies that have PCD. Olivia is 6 months old
We found out she has situs inversus after her sats were 82 a...
Rubymae02067 months ago
Our daughter has just been diagnosed with the condition after 9 long years of being told 'she's just a kid with a runny nose!'
We have been ...
Missing School Again!!!
Mummy047 months ago
Harrison who is 13 has an average school attendance of 64%
Due to 2 week courses of IVs , hospital appointments and generally feeling u...
FPolly8 months ago
Does anyone else suffer with their ears alllll the time?
I had an op about 13 years ago and unfortunately was un successful. An...
Primary ciliary dyskinesia: mechanisms and management
N1238 months ago
A research paper outlining mechanism and management of PCD.
Happy readings x
Port A Cath
Mummy048 months ago
My son Harrison is 13 and had a port fitted when he was 3 for regular IV's ( every 3 months for 2 weeks ) . He is just about ...
Danni9108 months ago
Morning all! Hope everyone is as well as can be expected!
I’m 33 with PCD. Unfortunately for me, it was a late diagnosis and as a result I ha...
8 Replies1 Like
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