Custom Search 1

Cystic Fibrosis: how to be more health aware

SYMPTOMS: The majority of people with cystic fibrosis present with recurrent chest infections and an inability to gain weight normally (Image: Cystic Fibrosis Trust)

THE CYSTIC Fibrosis Trust exists to support people with cystic fibrosis, a rare illness, caused by genetic mutations. Our work as a charity covers a range of activity including offering help and advice for people who have cystic fibrosis and those who are concerned about symptoms and signs.

Our work is also focussed on funding cutting-edge research (and driving up standards of care). We support people with the condition and their loved ones every step of the way.

More than 10,400 people from diverse backgrounds in the UK have been diagnosed with cystic fibrosis. It is the most common genetic or “inherited” condition in the country, but few people are aware of the cause, symptoms, signs and treatment needed to remain healthy.

The life-span for people with cystic fibrosis can be up to 40 to 50 years old but some people can die in childhood. There are currently 100 people who are aged 60 living with the condition. The median age of people who passed away last year is about 31 years old.

Cystic Fibrosis is not exclusive to Caucasian people
A common question for black minority ethnic people when learning more about this genetic condition may be, “Can I get cystic fibrosis?”

The answer is simple. No one can catch cystic fibrosis in the same way as catching a cold or flu, but it is genetic and is not exclusive to any particular ethnicity.

If you have a history of cystic fibrosis in your close family and you are planning to start a family, you and your partner can be carrier tested. However, like other members of the general population, people from the BME community should be aware of the potential of having cystic fibrosis and symptoms and signs of the condition.

There are at least 2,000 different mutations of the CFTR gene. This is the gene that causes the condition. The majority of people with cystic fibrosis present with recurrent chest infections and an inability to gain weight normally. A small percentage of people with cystic fibrosis may present with other problems such as male infertility, sinusitis and bowel blockage. Antibiotics given orally, intravenously or inhaled are needed to control or treat chest infections in the majority people with cystic fibrosis.

Infants are screened for cystic fibrosis at birth as part of the NHS newborn blood spot screening programme. A test can also be done during pregnancy to determine if an unborn child has cystic fibrosis but is usually only offered to mothers who are thought to be at high risk of having a child with the condition.

Sweat testing is the main test to confirm someone has cystic fibrosis. Their sweat will have higher levels of salt than normal. A parent may first notice their child's skin can taste salty when they kiss them. Some people are diagnosed later in life.

Symptoms and signs you shouldn’t ignore

If you are concerned about cystic fibrosis, common symptoms and signs are salty taste to the skin. (People have noticed this when kissing children or a partner.) Persistent coughing over a long period of time that does respond to normal treatment is a possible indication of cystic fibrosis (amongst other things) together with difficulties with digestion.

People with cystic fibrosis often look perfectly healthy. But living with cystic fibrosis is a lifelong challenge involving a vast daily intake of drugs, time-consuming physiotherapy and isolation from others with the condition. It places a huge burden on those around them and the condition can critically escalate at any moment.

Get in touch to get help
Getting the right information is important. Raising awareness in all communities increases the chance of correct diagnosis for patients. Cystic fibrosis is a serious condition, but treatment is available to help patients live productive, healthier lives.

For more information about cystic fibrosis, visit the Cystic Fibrosis Trust website , call our helpline on 0300 373 1000 or 020 3795 2184, or email us at helpline@cysticfibrosis.org.uk.

Read every story in our hardcopy newspaper for free by downloading the app.

Facebook Comments