ADVICE.

The advice I provide here is likely to be of use to young CF patients and parents as it provides information about how to manage Cystic Fibrosis and how to ensure you are doing everything you can to prevent CF from significantly damaging your health.

How do I tell my friends that I have got Cystic Fibrosis?

I am very independent and highly introverted, I rarely my feelings and I am reluctant to let the fact that I have CF influence the people around me. I spent months toiling over whether to tell my friends that I have a life-threatening illness, the continual barrage of questions such as 'Why were you off?', time and time again, eventually became to fierce to ignore and I made the decision to tell a select group of people about my CF. It was an incredibly nerve inducing experience, standing alone in front of 30 of my peers pronouncing such a surprising revelation. I was not blind to the fact that upon leaving the room many of my peers would choose to circulate the subject of my illness around the school and yet that did not phase me because simply served to inform more people of my condition.

It is not paramount that you tell your peer about Cystic Fibrosis, but if you feel comfortable in doing so then it will certainly help to make your school life easier in the long term as treatment becomes more demanding. I regret remaining so intensively private for so long and I would not necessarily endorse such an approach, but it is a personal decision and only you know how you feel about revealing your illness to your peers.

How do I deal with the repeated hospital visits?

From an early age frequent hospital visits are a prominent feature and motivating yourself to attend can be difficult. Whether it is the beginning of IV Treatment, a blood test or an annual review, attending hospital appointments never pleasant. Annual Reviews have always frustrated me, usually lasting three hours and consisting of meeting with several members of the your respective CF team. I can be quite apprehensive prior to upcoming appointments given that I worry that there may be a problem or my routine may need to be changed.

Whilst I sometimes fail to recognise the importance of hospital visits I do appreciate the excellent level of care that I have received throughout my life. The high level of care that I received during my years as a young patient has been maintained since transferring to the Adult Unit. I would suggest remaining relaxed about visiting hospital and to remember that anything is suggested or changed is for your benefit and will be of long term assistance.

How do I manage dealing with the amount of medication?

Coping with the substantial amount of medication can become increasingly difficult as you get older because you may require increased doses or new medication may be introduced. Managing the variation medication is heavily reliant upon self discipline and organisation. Providing that you have convenient access to all your medication and in particular your Creon throughout the day you should be able to establish a daily routine in which you take all of your required medication.

What effect is CF having on my family?

I am incredibly fortunate that I have a loving, caring family and highly supportive extended family. I have enjoyed a fantastic upbringing and been given opportunities in which to progress in my life. However, the emotional impact of Cystic Fibrosis can be overwhelming and I have often worried about how my illness is affecting the closest people around me. The very nature of CF dictates that it requires unrelenting treatment and in certain circumstances, special dispensation. I worry about the strain in which I have placed upon my family with regards to times in the past whereby my health has deteriorated.

I want to emphasise the importance of family in coping with CF, you will endure times of physical and emotional pain and the support of your close family will be invaluable.

What does the future hold for me?

It is an unanswerable question of life; the future. The reality of Cystic Fibrosis can make the future seem incredibly daunting, but it will only be so if you allow it to dictate your outlook upon life. Do not let CF prevent you from fulfilling your hopes and aspirations. Choose life not Cystic Fibrosis. The ever advancing research taking place is providing hope and maybe, just maybe the future contains a cure for the illness. The future is bright, make of it what you will.

Over the years my diet has been of great concern to me. For everyone with CF, having the right diet is crucial. You have to balance a healthy diet with one that has a high fat content, so it can be very difficult at times.

Everyone who has Cystic Fibrosis suffers from poor weight gain and slow growth when they are younger. If you have CF you need to have a high calorie diet. You have to eat foods that are have a high fat content. I am often asked by my friends; 'How come you are so skinny, yet you eat so much food?' I eat a lot of foods which for most people are considered unhealthy and fattening. However for any CF patient consuming at least 3000 calories per day is considered necessary for an adult. It can be disheartening when you are seemingly failing to gain weight despite ensuring you are fulfilling your calories targets.

My diet has improved dramatically over the past three or four years, only when I am feeling under the weather do I tend to want to eat less. My weight benefits from the vast amount of crisps that I indulge in during the day. I do not have a particularly sweet tooth and therefore do not consume much high calorie chocolate. Trying to take so many calories is difficult but buying monitoring your eating patterns you get a sense of what is the most effective way for you to gain weight. Try not get despondent and why not try enjoying the luxury of being able to eat the foods that you want to?

Tips about managing Creon? Well I think most people will already have a tablet container, or something to keep track of all your tablets. By doing this you are able to keep your tablets with you at all times and therefore you can make sure you take your necessary tablets at the right times of the day. Failing to take Creon with food means that you will not benefit from what you are eating. Even something as menial as a packet of crisps requires at least one Creon, without taking the correct number of Creon you are merely consuming 'empty calories.'

DIET

I know that I don't do enough exercise during the week. During my time at secondary school the only significant exercise which I benefited from was a compulsory one hour lesson per week. Some people find exercising easier, especially people who are more inclined to partake in various sports. I have never been particularly keen to engage in physical activities and I have often retired early from sport because I felt I could not participate for a great length of time before feeling fatigued and short of breathe.

You need to be aware that any any exercise that you do can only be of a benefit to you. It is importance to strike a balance between exercise and a calorific diet. If you have good facilities at your school then take advantage of them. Most schools also have links to other local clubs which you can join if you want to. I am considering applying for a gym membership as students can benefit from reduced annual admission rates and having a health condition can entitle you to other advantages.

EXERCISE