Primary Ciliary Dyskinesia

[Chimai]

Does anyone else in this chat group know anything about Primary Ciliary Dyskinesia?

[sassy59]

Hi Chimai, looking on the nhs website it’s a very rare inherited condition that affects the cilia (tiny hairs that help clear mucous). They just don’t work properly so the sufferer has constant chest infections etc,

Hope that helps a little. Xxxxx

[Chimai in reply to sassy59]

Thanks Sassy,

It appears that after all the tests my son’s undergone in the last 6 months he has this condition.

We’re going to our first PCD support clinic in September. Xx

[sassy59 in reply to Chimai]

Oh bless him, what a shock for you all. I hope things improve and you get lots of help and support. Keeping you in my thoughts. Xxxx 💕

[Chimai in reply to sassy59]

Thankyou so much ☺️

I do feel that at least with a diagnosis his life will improve going forward xxx

[cofdrop-UK]

Hi Chimai

I think we have talked on here on one of your previous posts. I am sorry your son has PCD but I am relieved for you that you now have a definitive diagnosis and can move forward with the correct treatment.

PCD is one of the inherited causes of non cf bronchiectasis and affects the function of the cilliary. With reference to you son’s lungs the treatment will be as for bronchiectasis. I’ve had bronchiectasis since babyhood but that is a long time ago now and things are, at long last, moving forward. I will give you a link to Patient Priorities Bronchiectasis by the European Respiratory Society. If you look at the ‘about’ you will see, along with my ugly mug, that the PCD Family Support Group were also involved.

europeanlunginfo.org/bronch...

There was a lady who posted about 13 days ago who has a daughter who was diagnosed with PCD. I thought I had replied but it doesn’t appear to be there.

There is also a lady from the States who, along with her siblings, has PCD and also has situs inversus. She used to be a respiratory thereapist and is so knowledgeable about this condition. She is a member of Bronchiectasis R Us and if you posted she would most certainly get back to you.

It sounds as if your son has not only a strong Mum but a very practive consultant. I truly believe with the tireless work the proactive and dedicated conultants, many of whom are involved with ERS that there will be many new trials and treatments in your son’s lifetime.

I wish you and your dear son well.

Love cx

[Chimai in reply to cofdrop-UK]

Thankyou so much for the link cofdrop.

Ed’s with one of the best specialists in the country at Paediatric’s Bristol chest specialist department. He’s been superb!

I am very disappointed that the constant chest infections he’s been coping with for the last 7 years have gone untreated and misdiagnosed as hay fever combined with uncontrolled asthma thus causing extensive Bronchiectasis throughout both lungs.................however things can only get better now!!

I will follow your link and know now that there’s support all around us.

Thankyou once again xx

[cofdrop-UK in reply to Chimai]

You’re very welcome Chimai. I am so pleased your son is under the care of an excellent consultant and is now getting the treatment and support he needs.

Sadly your story of non or misdiagnosis is very common, not only in bronchiectasis but even in PCD. There was a lady on here who was dx with PCD as an adult, when the clues were glaringly obvious.

At least your son is now in good hands.

There is support and definitey support here. I wish you well at the PCD support clinic in September.

Please let us know how your son gets on.

With love

Cx

[Chimai in reply to cofdrop-UK]

Thankyou ☺️ Xxx