Hello :)

[ostarlight55]

Hello all, i haven't introduced myself yet- I'm a 23yr old female who got diagnosed with Primary ciliary dyskinesia at age 6. Other conditions such as asthma bronchiectasis and sinusitis- Have had several flare ups and pneumonia within the last few years. It is great to find a place where people can discuss their situations and get support! Speak soon

[Jjude]

Welcome to the forum ostar, its lovely here and members are very willing to discuss and advise.

xx

[ostarlight55 in reply to Jjude]

Thank you Jjude

[grannyjan]

Hi welcome to the community, always someone here with similar problems to some one else. Feel free to rant and rave on an off day, and share news on a good day, you'll always find something to make you smile.

Gjan x

[ostarlight55 in reply to grannyjan]

Thank you grannyjan!

[Azure_Sky]

Hi ostarlight55

A very warm welcome. I am sure you will find a lot of support here. I don't know anything about your condition, but no doubt there are people here who do.

We have plenty to look at on here besides health issues, humour, photos and stories, particularly our wonderful Vashti. We all look forward to her essays.

Photos up to 2.5 mb size can be posted here. There are cartoons, jokes and puns too. Many of us are animal lovers (birds too)

Azure

[cofdrop-UK]

Hi osterlight

A very warm welcome to you. So sorry you have pcd. What took them so long to diagnose it I wonder. Do you have situs invertus? I am sure there must be someone on here with pcd, although I can't say I have seen a post from anyone, although there are quite a few on here with non cf bronchiectasis which in the main was not genetic and asthma.

There is a lady on Bronchiectasis R Us from the States who used to be a respiratory therapist who has had bronchiectasis caused by PCD, obviously from birth, who is extremely knowledgeable and generous with her knowledge.

Love cx

[ostarlight55 in reply to cofdrop-UK]

Thank you kindly cofdrop I think i was quite lucky to get diagnosed at 6 as I've heard quite a few people don't get their diagnoses till their teens or adulthood, perhaps as its still a fairly unknown condition. I luckily do not have situs invertus- Thank you for mentioning the lady on Bronchiectasis R Us I will have to see if i can contact her at some point

[cofdrop-UK in reply to ostarlight55]

On reflection I don't really know why I was surprised you had not been diagnosed earlier. I know so many bronchiectatics who had spent years with frequent chest and sinus infections who were not diagnosed until their teens or later, sometimes wrongly diagosed with asthma. Bronch does not seem to be uppermost in primary care givers minds, so I imagine PCD is even less to the forefront. Maybe kids should be referred earlier to a consultant. I have read kids can see docs >50 times sometimes before the are dx.

I guess I may have been lucky (depends how you look at it) to have an excellent paediatrician as a baby many years ago who diagnosed bronch following whooping cough and double pneumonia. Although I think bronch was more prevalent then (before vacs, living conditions etc.)

Did your symptoms present shortly after birth hun. Just wondering how many chest and ear infections a child would have in would it be 2002/3 before being referred. So happy for you you don't have situs inversus.

If you just post on Bronch R Us I can guarantee this lady will come to you! Please stay with us too though.

I hope you are as well as can be at present.

Love cx