New to the forum.

[aishatu]

Hello everyone. I am new to the forum although my daughter was diagnosed with PCD around 5 years ago. It is only now that I am finding I need to reach out to others and talk about the condition. Just starting to feel all alone here and I think she needs to find others, her peers who can relate with her, she is 11yrs old. Also I wanted to ask if anyone has tried natural remedies to lesson the possibility of chest infections and if they have found anything that helps? Thank you very much.

Aisha

[fionac66]

Hi - welcome to the group. Are you in the UK? We hold events where you can learn more about pcd and meeting other people with the condition. pcdsupport.org.uk next one in HAlifax 28th April

[aishatu in reply to fionac66]

Thank you very much. We will certainly look into it. We are in London. I really hope it is something we can come to!

[TerryBun Administrator]

Hi,

We also have our annual PCD Day & AGM in Milton Keynes on Saturday 30th June 2018, which is closer to London. Please see the PCD Family Support Group UK website on pcdsupport.org.uk for more information.

[aishatu in reply to TerryBun]

Thank you very much. Yes! Much closer to London.

[fcfilice]

Hello Aishatu

I have not found one natural product which lesson my chest infection frequency. However I have noticed when I eat fresh red tomatoes on a daily bases from my garden I tend to get much less infections and remain healthier. Chest physio therapy and nasal rinses are my best friend along with puffers which has improved my quality of life a great deal. I wish I knew about my PCD when I was much younger. I would have been able to slow the progression or development of Bronchiectasis.

I have a family history of people with PCD all having different variation. My grandmother for instance who is my hero developed bronchiectasis in her late 30. She did not know she had PCD so she developed Cor pulmonale as well and had to sleep in a upright position in a chair later in her life with horrible sinus issues. But grandma did raise 8 children on her own and ran the family business for many years. My aunt however developed lung disease much later in her 50's with mild symptoms then I suffer. Then there is me who was born with kartagener syndrome ( Situs inversus totalis, bronchiectasis, sinusitis, Otitis media, fertility difficulty, and for me under developed upper sinus). My bronchiectasis did not develop until my late teens. My genetic testing determined that I have two different heterozygous copies of DNAH5 mutation (outer dyemin mutation).

We as PCD patience have a different way of life then the average healthy person and we can be full of surprises and accomplishments. I hope this was some help also keep giving your daughter lots of hugs and cuddles because she will need your support.

[Chrissie82 in reply to fcfilice]

The best natural product I have found helps a lot is called Oralmat Drops, they are specifically for good lung health, my chest infections have lessened considerably with the daily use of this x

[Ana_Amorim in reply to Chrissie82]

Hi Chrissie82, this product is only sold in UK? I'm from Brazil and here the treatment in patients with PCD is so bad that I never heard about it. I'm suffering with a lot of infections...this year I had 2 and last week I've been in a hospital for 7 days. Thank you!

[Chrissie82 in reply to Ana_Amorim]

amazon.co.uk/gp/aw/d/B00PP3...

[Chrissie82]

Hi, You can buy the drops off ebay or amazon xx

[Ana_Amorim in reply to Chrissie82]

Thank you!