Gwenie???

[anonymous]

Hello Gwenie if you are reading this (or anyone who is in contact with her)!

My name is Emma and I am an adult with CF from the UK. I was doing a Google search to try and find information on the Gene Mutations that I and my brother have, when it showed me your message from March 2004.

I understand that your baby daughter has the combination 3659delC and DeltaF508. This is exactly the same as we have and I understand that you were interested in finding out if anyone else shared this combination.

If you want to get in touch with me my email address is bradharris@tiscali.co.uk.

Hope you are still using this forum and that your daughter is doing well.

Emma x

 

[anonymous]

Emma, I have no idea who this Gwenie is, but I have a question for you. I posted something earlier about CF care in the UK, but nobody has responded to it yet. If you have time, I am really interested in hearing what you have to say about healthcare there.

Best of luck with finding this gwenie


Julie

 

[anonymous]

Hi Julie,

I would be more than happy to give you information on CF care here in the UK. I only found this message board yesterday actually. In the UK we also have fantastic message boards for adults/parents and carers/teenagers and partners. Sometimes people from the US visit us on it and people are more than happy to welcome them if any of you fancy popping over to it! Just recently a parent of a child with CF in the States was talking to us about the differences/similarities in CF care and it was very interesting.

If anyone wants to take a look the website is: http://www.cftrust.org.uk/

The you need to click on "Meeting Point"

Anyway, back to your message. Would it be ok if I write about it tomorrow as it is currently 1.10 am here on New Year's Day? I have just got home and am having my nebuliser before going to bed!

Happy New Year from the UK!

Love Emma (30 yr old with CF from the UK)

 

[anonymous]

NO problem to wait emma, whenever you have a chance to reply is just fine, I am curious but we won't be moving like tomorrow or anything, we are just trying to get some information.

Thank you and happy new year!

Julie

 

[anonymous]

Julie just to let you know i have posted a loong essay on the care i get in England..take a look!!

Emma 18 w cf

 

[anonymous]

Hi Julie

This is the first Emma again (another Emma from the UK has also kindly posted info for you since we last spoke!)

I have replied to your query on the adult forum, where you originally submitted it. It is rather long, so make yourself a cup of coffee first!

Emma (30 yr old adult from UK)