Cystic fibrosis support for members

Many people with cystic fibrosis develop symptoms soon after birth. CF symptoms in infants and children include:

Sometimes, people reach adulthood before their CF is recognized. This is known as atypical cystic fibrosis. Signs and symptoms are similar to CF diagnosed in childhood. But they tend to be milder and slower to develop, causing a delayed diagnosis.

Cystic fibrosis is usually diagnosed in childhood during routine newborn screening.

First, a doctor will perform blood tests for a variety of conditions, including CF. Two blood tests are usually performed – one soon after birth and one a few weeks later. Among other things, these blood tests look for a chemical called immunoreactive trypsinogen (IRT). If high levels of IRT are found, it doesn’t necessarily confirm CF. But the likelihood is higher.

If CF is suspected after blood testing, additional tests typically include:

• Sweat tests – These determine the levels of chloride (salt) in your baby’s sweat. If levels are high, CF is likely.
• Genetic tests – These check whether your child carries the CF trait in their DNA.

An early diagnosis of cystic fibrosis is best. That way, you, your child and your care team can start determining the best treatment plan as soon as possible.

Cystic fibrosis symptoms are treatable. You’ll work with a team of specialists to manage the disease so you or your child can focus on improved health and well-being. Common CF treatment options include:

• Keeping airways clear – Your care team will work with you or your child on special ways to breathe and cough. You or your child might also get chest physical therapy (or respiratory therapy), which helps loosen and drain mucus. There are also mouth devices and vests that can help make breathing easier.
• Taking medicines – These often include anti-inflammatory drugs (like steroids) and antibiotics to treat and prevent infections. Inhalers to make mucus thinner and relax airways, medicines that can help with digestion and constipation, and other medicines may also be prescribed.
• Managing digestive symptoms – CF can interfere with proper digestion. But digestive therapy can help you or your child still get the right nutrition. This includes enzyme replacement therapy to help the intestines absorb nutrients, nutritional therapy to replace lost nutrients, and enemas and stool softeners to avoid constipation.

A diagnosis of cystic fibrosis can be life-changing for your child, and yourself. But besides medical treatments, you can help your child by being a calming and reassuring presence for them. Encourage them to eat healthy, move more and drink plenty of water. Also ensure they see their doctor and care team regularly – they’re there to support you and your child as you navigate the unique circumstances that come with CF.

As time goes on, your child can learn more about their disease, actively participate in treatment and build their self-confidence. It won’t always be easy. But your care team and our specialist support services can help connect you with the right physical and emotional health resources.