Wednesday, 17 July 2013

Outrunning CF

Posted by Mark
Samuel came back from clinic on Monday weighing a nice healthy 10lbs 12oz and we are delighted to see that this puts him firmly on the centiles chart!

Tracking Sammy's weight is an important part of his treatment because if he is putting on weight it means that the medication is working and is enabling his body to extract and process all the goodness from his feeds. It is also important because it means he will be able to build up the strength to hopefully stay ahead of the symptoms of Cystic Fibrosis for longer and if he should get ill, to recover more quickly with minimal damage to his lungs.

I have come to realize that this feature of his care, the building up of his strength, the constant monitoring of everything, the prophylactic courses of antibiotics, is all about staying one step ahead of CF. It is quite simply a race against the effects of the condition. If we stopped all treatment he would likely be dead before his first birthday as was the tragic fate of children born with Cystic Fibrosis until fairly recently. Since the late 1930s however, when CF was first recognised, life expectancy has crept up little by little. Today the median life expectancy for someone with CF in the UK is 41, meaning half of the people with CF are living longer than that, but of course also sadly meaning that the other half are dying before they reach their forties. This means that we are getting better and better at staying one step ahead of the effects of CF but they are always hard on our heels. It is a constant battle and I know already the impact this has on one's nerves; wondering how long it will be before an infection, how long will it last, how much damage will it do and how much useable lung will my son be left with? Such thoughts are never far away and the horizon of each new day is anxiously scanned for any signs of infection.

It takes a great deal of effort and energy to stay ahead of the effects of CF. I was recently reading the blog of one man with CF who has never been admitted to hospital for treatment of an infection. This is an amazing achievement as such admissions are a fairly routine part of the treatment of CF. But he runs up to 100 miles a week to fight off those infections, and to make sure his lungs are as strong as they can be. 100 miles. Every week. Just to stay alive.
If you want to read his blog, it is

We need a better way to beat the symptoms and the underlying genetic causes of CF otherwise no matter how fast we run it will still catch up with us in the end and when it does, it will always be too soon.

And that is why I too am running. On October 6th I will be taking part in the Royal Parks Half Marathon to raise money for the Cystic Fibrosis Trust. As well as providing help and support for those with CF and their families, the CF Trust helps fund research into treatments that will one day help us to reach the goal that one hears a lot in the world of CF: the day when those two letters stand not for Cystic Fibrosis but for Cure Found.  Please click on the link below to sponsor me as much as you can and help to bring that day a little closer.


  1. Hi there, Mark! I just wanted to let you know that I've added your blog to the CF Blogroll. Sammy looks like the sweetest little one! I hope that he is able to maintain great health and weight. Getting a CF diagnosis is always heartbreaking, but there has never been a better time to be a baby with CF - the genotype-specific medications they are coming up with now are truly incredible. I have the rare g551d mutation that is targeted by Kalydeco and have been on the drug for a year and a half now. In that year and a half I have seen some truly miraculous improvements AND a healthy pregnancy after a long period of CF-induced infertility! I hope that your son will be able to benefit from a similar treatment soon.

  2. Thank you very much Cindy. I'm so glad that Kalydeco is working so well for you - it certainly seems pretty miraculous from what I have been reading about it. Great news about the healthy pregnancy. Your daughter looks very cute! I hope you are enjoying all the joys and wonders of parenthood.