PCD Family Support Group (UK)
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New....

Our daughter has just been diagnosed with the condition after 9 long years of being told 'she's just a kid with a runny nose!'

We have been given the PCD support website, so we are just learning what its all about. Our daughter has been given an 'acapella device' to use twice a day to start with for physiotherapy and we are due a visit from the physio in a few weeks time.

As parents, we are feeling a bit bewildered by all the information and not really sure what we should and shouldn't be doing to help our daughter.

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You are on the right path connecting here and getting a daily therapy set up. I use 7% saline everyday and a flutter device. I grew up in UK and came to Canada at 27. I am 49 and went undiagnosed until I was 40. I saw a specialist at 13 who said I had a cough that I would grow out of.....

I also watch my diet trying to avoid dairy and sugar but not completely. It does appear to reduce mucus for me personally. Trying to stay physically active is really important for me so my body is stronger to fight infections and being aerobic can also help me to sometimes get mucus up too.

I know you will get lots more advice here.

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Hi ... sorry for the slow response to this message. Happy to chat to you about any questions you have on our helpline 0300 111 0122. If there is no one here to take your call leave a message and we will get back to you asap.

Fiona (Mum to two boys with PCD aged 20 and 22)

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You are the path with your daughter. As a child my family was very caring but did not understand my health problems so as I got older I seek out doctors and services for myself. I stayed strong and did not give up on breathing clearly. Being a loving and understanding parent is the best gift to a child with PCD.

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My husband and I️ can so relate to your family’s struggles. We have spent 12 years searching for answers and have finally accepted PCD as the cause to our daughter’s struggles. Keep her active when she is well. Act quickly when she shows signs of becoming ill. Find a doctor with which you feel comfortable communicating.

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Can I ask if your daughter had any other symptoms other than a runny nose?

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