Congenital heart disease refers to any type of birth defect that affects the normal function of the heart, and by nature these problems are very hard to notice for people who are not close to those affected: typical symptoms include things like extreme tiredness and a rapid heartbeat, and sometimes if the defect is mild enough it may not be noticed until much later in life. In the UK, it is estimated that about 80% of the 14 million people with disabilities have ‘hidden’ or ‘invisible’ diseases – those that can’t be easily perceived by those around the person.
However, just because a disease can’t be seen doesn’t mean it doesn’t exist, and this can be very hard for children to understand – it is often difficult for them to comprehend why somebody who appears to be perfectly fine cannot participate in the same activities as other children. For those with congenital heart disease this can include lots of things – from intense exercise, to contact sports, to even rollercoasters. As you can imagine, it is even more difficult for those having to live with the inability to do the same things as everybody else, and perhaps more so still for the families who attempt to support and comfort these children through lots of frustrations and medical difficulties.
Because of this, these children can often feel isolated from their peers. However, the work of bodies like Heart Heroes in providing the children and their families with events at which to meet and support each other, and encounter other children and parents who understand exactly what they have to deal with, is critical to relieving some of the stress, frustration, and other negative feelings that those involved have to handle – on top of, of course, all the physical medical problems that can also become a huge worry for families. Treatments can involve lots of complicated solutions like surgeries and various combinations of medications.
In the UK, there are measures to help out those with hidden disabilities: the sunflower scheme provides lanyards to those affected, providing an easily-recognisable ‘visual clue’ to anybody around them that they are suffering from a disease, and may need extra time, or help, or to explain why a child with a congenital heart disease may not be able to participate all the time, or might be feeling tired or stressed.
Whatever the case, these children need as much support as possible, and that is why we plead that you consider donating to Heart Heroes to support those affected by congenital heart diseases in ways beyond simply providing medical treatment.