Having cystic Fibrosis or having a child/ family member with Cystic Fibrosis can be lonely and isolating at times. Because people with Cystic Fibrosis shouldn’t be in close proximity to one another due to cross contamination there are no support groups you can physically visit, you can’t talk to another CFer face to face, you can’t meet up with a CF pal for a chat or meet up with people who understand what its like. You can’t even chat to people in the waiting room for CF clinic as there is no waiting room! We are rushed into our own room as soon as we get to clinic so we don’t brush shoulders with any other person with CF.
This is why the internet is such a lifeline for sufferers and CF families. Its a safe place to get information, advice, have a moan and most importantly find a connection. I find great comfort in reading other peoples stories, especially of other CF moms and of young people who are coping really well with the condition, so many of them have such a positive outlook on life it gives me hope for Joe’s future.
So I thought I would just share with you some of the places on the internet I go for CF advice, info and support- hopefully you will find something useful from these places too.
The Cystic Fibrosis Trust website is a goldmine of information for sufferers and families in the united kingdom. You can find information and advice on all areas of CF from funding to food. The CF forums are particularly useful. They are split into different areas such as adults with CF, CF teens, Parents of children with CF as well as fundraising forums and the like so its really easy to find the information and the type of support you need. Many a time I have had a look on the forum to check something I was too scared or felt to stupid to ask and EVERY TIME I have found great comfort that someone else has already asked and worried about it.
Here is a list of some of the blogs I check out regularly:
This blog covers the adventures of Joanie who lives in the deep South in America. She uses her blog to provide information about CF and how it affects her everyday life and also to document her adventures and how she doesn’t let CF stop her from living her life.
This blog is beautifully written by the self named cystikone who suffers from CF and also works for the “More than Just me Foundation”
please read his blog post “what is cystic fibrosis” its a hard read, especially for a mom of a CFer but its brilliant too.
This bog is by a 24 year old mother who has CF. She is waiting for a double lung transplant and talks about the trials and tribulations of being a mom with CF. She particularly focuses on how CF affects her whole family a part of CF that many people do not think about.
This is a blog all about Eli who has Cystic Fibrosis and his family and is written by his mom. It focuses on what its like to be a mom of a child with CF and the challenges you face, but also concentrates on the joy that can be found in everyday life.
Can’t Eat can’t breathe
This is one of the first blogs I read about CF. It is written by Jay who has CF and is a very honest account of the condition as well as covering his other interests like film and music. You should read his article he wrote of cracked.com about CF.
This is a lovely blog about husband and wife Andrew and Amber. Amber writes about there life with CF- Andrew has CF and Amber does not but they both live with the effects of the condition everyday. The blog takes a positive outlook on life and love with CF. Andrew has recently had a lung transplant.
Please take some time to read or follow some of these blogs and help raise awareness of the condition!