Cystic fibrosis lifeline

Hi Neil, thanks so much for getting back to me so promptly.

I don’t know if you remember calling me here in the UK about a year ago, when I chatted to you about my daughter who has cystic fibrosis.  She is just turning 37 and I mentioned to you that the Brompton were suggesting she think about going on the list for a double lung transplant.   They have since changed their mind about that.    You suggested she take your Lactoferrin.

The reason for this email is really just to give you feedback to date.  She has been extremely well since April.  Her lung function had improved and she has only once been on oral antibiotics over and above her maintenance meds. That is amazing as in 2013 she had about 7 lots of IV’s.   She also has not had a cold this winter, which is really almost a miracle.

I am spending a fortune on various supplements for her and that,  including the Lactoferrin,  I think is what is helping her body cope to a large extent.  You did say to me at the time that if she isn’t taking anything else,  she must take Lactoferrin.  Thank you for that!  We all know that CF is a terrible condition and that things can change at any time,  but hopefully we can keep that at bay for as long as possible. .

I would just like to ask you to let me know if you have anything new  which becomes available and which you think may benefit her, bearing in mind that she cannot tolerate dairy.

I was a bit concerned when I called your office here in the UK to be told that they are out of stock of Lactoferrin and had no idea when stocks would be replenished.  When I asked to speak to somebody in authority the lady then mentioned that the Lactoferrin Xtra would be coming in on Friday.  Thank goodness for that as that is what I wanted.  Do you carry reasonable stocks here in the UK as I would not like to be in a position that you run out,  especially in the winter.

With your permission I would like to write a review on the CF Foundation website where the CF patients chat online and offer one another support and suggestions. If there is anything else you would like me to include,  please let me know.

With kind regards

Doreen Lear, UK