CF is one of the world’s most common, life-threatening, inherited diseases affecting around 10,000 people in the UK. For the child with CF, internal organs, especially the lungs and digestive system, become clogged with sticky mucus making it hard to breathe and digest food. A strict regime of medication (taking as many as 50 tablets a day) is essential, as well as daily physiotherapy and in most cases inhaled therapies via a nebuliser.
The school morning routine is hectic for most families and getting out of the door on time can be a challenge. Imagine adding in a child with CF (maybe more than one) who needs to do chest physiotherapy, inhalers, inhaled therapies and take tablets all before school. In order to achieve this, children and their parents usually have to get up at around 6am. Some children are even doing their treatments in the car on their way to school. This routine is then repeated after school and every single day which leaves little time for family, work or leisure.
Even with all this effort children can become unwell enough to require hospital admission. For some children with CF going into hospital for a couple weeks every so often is the norm. As well as this children need to be seen for outpatient clinic reviews usually once every 2 months and this routinely takes up to 2 hours with families often travelling long distances to get to their hospital.
Sometimes extreme medical intervention, such as a lung transplant, is necessary. Financial issues can be overwhelming for our families as the intense daily therapy and the frequent hospitalisations can make it hard for parents to maintain employment, and they become reliant upon just one income or benefits alone.
As I’m sure you can imagine all of this can cause immense stress within families resulting in a divorce rate far higher than the national average. CF reduces lifespan considerably. However, with early diagnosis, stringent daily regimes and advanced medicine, many people will live into their forties but far too many still die in their teens and twenties.
This uncertainty can have a significant impact on the mental well-being of both the child with CF and their family. Parents and children themselves can become extremely anxious about becoming unwell with a lung infection, as this can have serious consequences. Usually, children with CF figure out early in life that they will not have a full life span and these worries can develop into psychological problems for the children, their siblings and the parents who care for them.
Living with CF has many hidden costs; people with CF have higher nutritional requirements, which greatly increases food budgets, houses need to be kept warmer and drier and there is a greater need for high standards of cleanliness meaning more time spent on laundry and house-hold chores. Additionally travel to and from hospital can be expensive, as can hospital parking fees and prescription charges. Exercise is extremely important to maintain wellbeing and sports classes, gym membership and equipment all add to the financial burden. On top of this, benefit changes have created a huge amount of stress and uncertainty as CF is too often misunderstood. We are here to provide these extraordinary families, coping under all this pressure, with a little break.
Studies have shown the value of a holiday for families struggling with CF; the psychological uplift has a direct impact on the effectiveness of treatments and subsequent measurable heath outcomes. These holidays help children with CF stay healthier. Time and again we hear from our families that these trips would not have been possible without our help, and that the excitement of planning for these trips and the reliving of memories together is a high point of family life.
The CFHF is here to help these amazing families have positive experiences and make happy memories.