PCD Family Support Group (UK) | HealthUnlocked

PCD Family Support Group (UK)

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Pcd and Ataluren

Good evening.I read about research on the use of the drug Ataluren for the treat...

4th jab

I’ve had letter telling me to book 4th jab. As I’m having a nurse come to my ho...

Spring Booster

Does anyone know yet if we are included in the group that will be having this bo...

Stopping Azithromycin after 25 years

Anyone else been told to stop their alternate day dose of Azithromycin due to co...

Pcd and parents

Hello Everyone. My daughter was diagnosed with PCD half a year ago. Since then, ...

Lung infection

Hi, can a lung infection go on from 2020 to date? I have a face to face with Bro...

Covid

Good evening. Husband and I had Covid 7 days ago, now we are negative. Our daugh...

Appointment with Brompton hospital london

Hi, I have an video appointment on Monday with Brompton. Are they good? Are the...

PCD

Is this a considered to be a serious illness?

PCD

What does PCD stand for? Thank you

Hello, I’m new here my Name is nicola

I will have to start taking azithromycin 3 times a week as I have had 5 chest in...

HAPPIER NEW YEAR. to everyone

Let up hope and pray that 2022 will be better than last year

NHS PCD Service Specification

Could I ask if members of this forum are receiving the services specified, where...

PCD poem

Cilia, little hairs, you are so important Little hairs why don’t you move Ther...

Azithomycin

I read that some with PCD are on constant 3 day courses of azithomycin. Do you ...

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am not ' eligible' but have PCD!

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am ...

Pcd rsph4a compound heterozygosity

Hello. My daughter is 2 years and 4 months old and genetic testing has determine...

Masks,iv etc

During the war falling debris flattened and moved my nose, I cannot breath very ...

Antibiotics

My consultant at the Brompton put me on a constant 3 day course of Azithromycin...

Respiratory Physio therapy

For the last 18 months I’ve been paying a physio, who comes to my home twice per...

Dealing with anti vaxxer

So I am obviously extremely vulnerable and have had both Pfizer jabs a while ago...

Adult PCD specialist centre in North West UK?

Hey everyone, Are there any adult PCD specialist centres in the North West of th...

Is is possible to have situs inversus totalis without PCD ?

Just out of curiosity.

Anyone experience with ear tubes / grommets?

Hi you all. My boy Thom (now almost 3 yrs old) was diagnosed with PCD when he w...

Anyone similar ?

Hi , my daughter is 12 has had a wet cough (the amount of stuff she coughs up is...

Inhaled tobramycin

Hello, Just curious if anyone has had side effects after starting inhaled tobram...

Vaccine worries

Hi, Are people with PCD likely to become quite poorly after having the vaccine ...

Situs Inversus Totalis, Bronchiectasis and possible PCD.

Greetings Everyone !!! I am so happy to have found this support group I just cri...

Volara System

My son with Kartagener’s just got approved for the home Volara System by Hillrom...

Pfizer vaccine

I had the jab last Thursday, tender arm for 24 hours, no other side effects. Hav...
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About us

This volunteer-run group supports patients and families affected by Primary Ciliary Dyskinesia (PCD) in the UK...

Read more about PCD Family Support Group (UK)
0300 111 0122

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The PCD Family Support Group relies entirely on voluntary donations, we do not receive any public money to support our work.