PCD Family Support Group (UK) | HealthUnlocked

Hello, and thanks in advance for any assistance. A long time ago now, we were lucky enough to have a little girl with Dextrocardia situs solitus and no other...

My mother was one of 15 centenarians invited in year 2000 to St Paul’s for Queen Mother’s 100 birthday service. We had to be seated by 10.30, an hour before...

Hi everyone, I'm Ana Carolina from Brazil and I have a doubt: anyone with PCD did vaginal childbirth or necessary was recomended th Cesarean section? My...

Hi, For the past few days I have been extremely breathless, the doctor is treating me for a chest infection even though I have no other symptoms. I am sure...

My Consultant knows that I’ve had bad infected two years. Now I’ve got rid of pseudomonas again she has put me on one Azithromycin every day. One GP I’ve...

Does anyone here (adults) with PCD have trouble with their ears? I had grommets when I was much younger and used to hear ok-ish! But the last few years my...

Hello, Other than this forum, what 'communities' (forums, chat groups, meetups) or community groups do you use in regard to PCD? Many thanks, G

does anyone worry about flying with PCD? i have pneumonia right now. Do you think it is safe to take a 3 hour flight? I am on antibiotics but still not 100%...

has anyone heard of post nasal drip? I have it and it’s severe on off all day and before going to sleep. It’s awful. Just wondering, if anyone can give me...

Good evening. Does anyone have mutations in the RSPH4a gene? I would like to hear experiences.

I’m going to QE Hospital Birmingham tomorrow to be set up for Two i.v. Antibiotics to be administered at home by specialist district nurses. Haven’t had I.v....

Good evening.I read about research on the use of the drug Ataluren for the treatment of PCD, a case of point mutations. Does anyone know something about it?

I’ve had letter telling me to book 4th jab. As I’m having a nurse come to my home this week to take blood sample, I’ve asked surgery for the jab to be done at...

Does anyone know yet if we are included in the group that will be having this booster? It says those 75+ and immunosuppressed then on website those at high...

Anyone else been told to stop their alternate day dose of Azithromycin due to colonisation of Mycobacterium Abscessus in the lungs? I stopped taking it 14...

Hello Everyone. My daughter was diagnosed with PCD half a year ago. Since then, with inhalations and physiotherapy, she is much better. Still, I keep thinking...

Hi, can a lung infection go on from 2020 to date? I have a face to face with Brompton on the 2 March 2022. A&E have said it’s lung infection, I have been...

Good evening. Husband and I had Covid 7 days ago, now we are negative. Our daughter has PCD, this morning the home test was positive, after 15 minutes the...

Hi, I have an video appointment on Monday with Brompton. Are they good? Are the consultants highly trained? Thank you

Is this a considered to be a serious illness?

What does PCD stand for? Thank you

I will have to start taking azithromycin 3 times a week as I have had 5 chest infections last year and twice ended up in hospital stay. The antibiotics did...

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

Could I ask if members of this forum are receiving the services specified, wherever they live. I’m 86, was diagnosed when 32, have never received any of the...

Cilia, little hairs, you are so important Little hairs why don’t you move There’s many lives you could have saved If you could properly move Our lives would...

I read that some with PCD are on constant 3 day courses of azithomycin. Do you ha ve gaps in this treatment, I.e. 3 days, then few days off. I’ve been on...

Has anyone had problems booking a 3rd vaccination or a booster? Apparantly I am not ' eligible' for the booster even though I received an email to book it and...

Hello. My daughter is 2 years and 4 months old and genetic testing has determined that she has 2 heterozygous mutations in the Rsph4a gene, diagnosed with Pcd....

During the war falling debris flattened and moved my nose, I cannot breath very well, but when years later I asked several times for reconstruction was told...

My consultant at the Brompton put me on a constant 3 day course of Azithromycin antibiotics which I have been taking for a few years now. Does anyone else do...