In conjunction with #raredieseasemonth, SACFA thought we would explore what makes Cystic Fibrosis patients, and the disease, rare.
If you haven’t heard of Cystic Fibrosis (CF) you can find more information on it on our website using the following link: https://www.sacfa.org.za/about-cystic-fibrosis/
Back to what makes CF rare:
There are estimated to be around 70.000 to 100.000 people with CF worldwide.
If we focus on the prevalence of CF in South Africa specifically, the percentage is significantly lower, at 0.00088518 %. Of the 59.31 million people in South Africa, as of 2020, there are only 525 people with CF registered on the South African Cystic Fibrosis Registry (SACFR). This isn’t to say that there
aren’t more patients, but the disease is rare enough that many unknown patients have yet to be diagnosed.
CF Patients’ rarity is however not simply determined by statistics. Not only are CF patients very tenacious and brave but in general they also know how to appreciate the little things in life and to make the best of what they have, especially their health. This is often true of chronic illness patients in general, but can still be considered to be #rare. CF patients are also relatively flexible in terms of going along with life and embracing whatever happens. They are good at fitting CF-care into daily routines whilst still enjoying life as much as possible.
The fact that the majority of people, especially in South Africa, do not know what Cystic Fibrosis is upon mention, showcases the rarity of the disease. CF is also known as an invisible disease and CF patients, if relatively healthy, are often mistaken for not being ill at all. CF patients are usually able to
incorporate their care to a point where it is so normal that it is often not noticeable to the untrained eye.
All in all, CF-warriors, as they are also known, deserve to be celebrated in their rarity and are definitely a special bunch.
International Rare Disease Day takes place on the 28 February, let’s all raise our voices in support of rareness in SA.
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