Missing School Again!!!
Mummy04a year 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...
FPollya year 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
N123a year ago
A research paper outlining mechanism and management of PCD.
Happy readings x
Port A Cath
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 ...
Danni910a year 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
Stage II COPD
Karloa year ago
I went to my pulmo specialist the other day and had the spirometry test done.
The important digits are
FREE WEBINAR TONIGHT!
Participate in a live webinar
As part of Primary Ciliary Dyskinesia Week at the ATS, and in conjunction with PAR partner, the PCD Foundation,...
Starting a family
I myself have PCD. My husband and I are trying to start a family.
We knew that IVF would have to be the only option for us, but we have ...
17 Replies1 Like
Flu season is upon us.
If you live in England and have a long term condition (e.g. lung disease) then you should be able to get a flu jab on the NH...
Be the first to reply1 Like
Primary ciliary dyskinesia: Myths and realities
2 Replies1 Like
Extreme sneezing typical of PCD?
Mpmca year ago
I asked my daughter's doctor this before, but was told it was likely due to allergy. Yes she does have known allergies, and her reaction is ...
Need A Little Advice
Sam_30a year ago
Just want an opinion on this.
I currently stopped taking my contraceptive pill. I was on the mini pill and was to take it everyday meanin...
fcfilicea year ago
I just purchased an Aerobika device today. I decided to treat myself for my birthday and I was as happy as a person purchasing a kitchen app...
3 Replies1 Like
PCD & heart problems
Hiddena year ago
Hi anyone know if PCD has any link with heart problems?
Baynajariana year 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
AnjalMehtaa year 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 ...
6 Replies1 Like
KayErina year 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...
5 Replies1 Like
Please help me assess my child symptomatically if he has pcd
GowriSivakumara year 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 year 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-95a year 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?
My name is Silvia and I am writing on behalf of my sister who has born with Kartagener syndrome often associated to Primary Ciliary ...
1 Reply1 Like
Just saying hi
Helzapopina year 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!
shannielarsa year 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
Beek45a year 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?
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...
JacquiSmitha year 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?
Carolanne1907a year 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.
Simmilou932 years 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
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...
Start a Community