CF Centre

Question

I’m a 41-year old man and at young age they incidently discovered that I have cystic fibrosis. Because I’m not often sick not a lot was done about it. At a later age it appeared that my vas deferens is not well developed and recently (probably already several times) I had pancreatitis. On google I discovered a link with these complaints.
I consider going to a CF centre but I’m afraid they will medicalize my rather healthy life. I aIso don’t know what the extra value of this could be.

Answer

Dear Mr,

You ask a question that is relevant to all people with CF who have a limited number of disease manifestations. It is nice that a person with CF has few complaints. Nevertheless it is important that this person with CF and few disease signs will consult a CF centre on a regular basis (yearly or twice yearly) to be certain that everything goes as well as possible. Most people with CF have a risk of developing lung infection as they grow older. If this is detected early on by a regular physical exam complemented with a lung function test, a treatment can be started if needed and lung damage can be prevented. Doctors in CF centres are very well aware of these mild or atypical presentations of CF and they will find an appropriate scheme of follow-up and treatment for every such person.
There are other advantages of consulting a CF centre on a regular basis and you have already summed them up yourself. The link between CF and certain disease manifestations such as infertility and pancreatitis is well known in a CF centre. That way you don’t need to worry where these symptoms come from and they can be recognized and treated earlier. For some disease signs preventive therapies exist. You can thus get important information in a CF centre.
We understand your concern of excessive medicalisation but patients can be confident that the doctor has a positive motivation towards the patient in front of him: his main aim is to help you and to preserve your health as much as possible, not to frighten you.

Kind regards
Dr I. Bronsveld
Pulmonologist UMC Utrecht

20.07.2009