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Volunteer Advocate

Late Diagnosis

While the majority of new cystic fibrosis (CF) diagnoses are detected very early in life via newborn screening (available in most provinces), there is a small percentage of children, adolescents and adults who are identified at various ages and stages. In this section, we will focus on adult diagnosis also known as “late diagnosis”. A late diagnosis is defined as an individual above the age of 18 years who is found to have cystic fibrosis. Currently Canada has approximately 181 late diagnoses of cystic fibrosis per year.

Most adult diagnoses are made once an individual exhibits symptoms. The most common symptoms include chronic coughing, recurrent sinus infections, infertility, and inability to gain weight. Abnormal bowel movements may also be an indication. The key diagnostic tool is a sweat test. Cystic fibrosis is caused by defects in a protein found in many tissues, including the airways and the sweat glands. As a result, these tissues do not work properly.

The sweat test is simple, very accurate and pain free i.e. there are no needles used. The initial part of the test involves the application (on a small area of skin on the arm or leg) of a colorless, odourless chemical. An electrode is then put over that spot. This allows the technician to apply a weak electrical current to the area which initiates sweating. A person may feel tingling in the area, or a feeling of warmth. This part of the test lasts about five minutes.

The second part of the test consists of cleaning the area and collecting the sweat on a piece of filter paper, gauze or in a plastic coil. Thirty minutes later, the collected sweat is sent to a hospital laboratory for analysis. The lab testing typically takes about an hour.

Adults diagnosed with cystic fibrosis usually are found to have delayed symptoms in CF and therefore have more atypical symptoms which may have been the cause of the late diagnosis. Research has shown that people with late diagnosis demonstrate fewer complications, less serious lung disease, and a lower incidence of pancreatic problems.

A late diagnosis of cystic fibrosis often brings a sense of relief to people because they finally have an answer to why they have felt this way for so long. It means that they have access to the best possible treatment for their illness and they can move on with their personal or career aspirations knowing that they will have the support that they need.

On the other hand, a late diagnosis of cystic fibrosis can be a shock at first as it represents a change in day to day life. Many individuals experience denial, anger and/or confusion and, for some people, these symptoms and feeling may be overwhelming.

It will take time to comprehend and accept the diagnosis of cystic fibrosis. An important first step is to learn about cystic fibrosis and what is involved in managing your symptoms. It is important to understand that cystic fibrosis is something you were born with and didn’t develop. Your CF team is available to support you and you may wish to meet with them more often through this initial period.

1 average over three year.

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