A community of patients, family members and friends dedicated to dealing with Cystic Fibrosis, together.
There is a new support site for the sufferers and carers of CF
Cystic Fibrosis Support Group
It is still in its infancy and needs all the support it can get.
There are forums and articles about the disease.
If you need information or just to talk with others in the same position as you, this is the place to visit.
It seems to be yet another “forgotten” disease, despite the fact that it is the most common life threatening inherited disease in the UK.
It is an awful debilitating disease that can affect many organs.
Cystic Fibrosis causes the body to produce thick secretions that particularly affect the lungs and digestive tract.
It is common for people with CF to encounter some difficulties with their lungs. A combination of physiotherapy and medication can help control lung infections and prevent lung damage. To avoid the risk of cross-infection, it is recommended that people with CF do not come into close contact with others with Cystic Fibrosis.
Physiotherapy consists basically of “hitting” the chest with a cupped hand, over a towel placed on the chest. It is combined with other techniques and drugs.
This has to be done every day and can last from 10 minutes to an hour. Just so that the sufferer can breathe.
CF can also affect the digestive system and the pancreas; causing Malnutrition because it prevents the absorption of food, it can in older sufferers cause Diabetes Mellitus. It can make patients prone to osteoporosis (weak bones). It can cause fertility problems, and can also cause blockage of the small ducts in the Liver (8%) and may necessitate a Liver Transplant.
And of course it affects not only the sufferer but parents and carers as well.
There are some 8,000 sufferers in the UK; over 2 Million people carry the faulty gene, that’s around 1 in 25.
I know that doesn’t sound like many but. Tell that to the people who have it and their families.
Each week, five babies are born with Cystic Fibrosis
Each week, three young lives are lost to Cystic Fibrosis.
At the moment there is no cure for CF. In 1964 life expectancy was five years, now it is thirty-one. More needs to be done.
There is some research into gene therapy as well new drugs, but as usual there is not enough money.
This is not an advert, but the support groups need your help. If nothing else check out the web site, it may make you think.