Cystic fibrosis is a rare genetic disorder that only affects about 30,000 Americans, When it comes to Black people, the numbers are even smaller as approximately five percent of those affected by the condition are Black American. Unfortunately, these statistics mean that Black people who have cystic fibrosis may not get diagnosed as quickly as they should. In fact, most of them are misdiagnosed with different illnesses and given treatment that doesn’t address their symptoms.
Cystic fibrosis affects the lungs by causing mucus to build up in them. If this happens, you may experience wheezing and shortness of breath. Since these symptoms are characteristic of asthma, you may get diagnosed with that instead of cystic fibrosis. Depending on the severity of the lung issues, you may get diagnosed with COPD instead.
The mucus from cystic fibrosis can also affect the digestive system. If the symptoms are mild, you’ll have indigestion with the occasional bouts of constipation or diarrhea. In this case, it’s easy to see why your doctor might think you’re dealing with a digestive disorder or food intolerance. The difference is that the usual treatments for digestive issues won’t completely alleviate your symptoms.
Occasionally, people with cystic fibrosis develop complications while their symptoms are still mild. One of the common issues in this case is nasal polyps. While they can be treated, you’ll find that it doesn’t last. If the polyps are recurring, it could be a sign that cystic fibrosis is the underlying cause.
Cystic fibrosis usually affects the lungs and digestive system by filling them with sticky mucus. The symptoms of the condition get worse over time, which can result in significant organ damage. As the mucus accumulates in the lungs, you’ll have trouble breathing and become more prone to developing lung infections. If left untreated, your lungs may fail. Where the pancreas is concerned, mucus build-up can result in poor digestion and absorption of nutrients. In time, you’ll have trouble gaining or maintaining weight.
If you have cystic fibrosis, some of the symptoms you may notice include jaundice, recurring chest infections, wheezing, shortness of breath, diarrhea, constipation, difficulty gaining weight, and smelly bowel movements.
People with the condition are also more likely to develop osteoporosis, diabetes, sinus infections, nasal polyps, liver problems, and fertility issues.
Given the rarity of cystic fibrosis, many doctors are unlikely to diagnose the illness correctly the first time. The rates of diagnosis are even lower for Black Americans. Black people who have the illness are often misdiagnosed for years before their symptoms are so severe that they can’t be ignored. According to personal accounts, cystic fibrosis is still treated like a ‘white person’s disease’.
Another potential problem is that cystic fibrosis is usually diagnosed during childhood. However, not everyone experiences cystic fibrosis in the same way. Some people have mild symptoms that don’t become a concern until they are in their teens. It’s also not unusual for symptoms to appear one at a time instead of all at once.
If you don’t want that to be your story, it’s important to start documenting your symptoms. You should also let your doctor know if the medication you’ve been prescribed isn’t working. This is usually when most doctors will look a little deeper into your experience. It may be more obvious with your breathing problems than digestive issues as many things can cause an upset stomach or smelly bowel movements.
It can also help if you find a doctor who has worked with Black cystic fibrosis patients before. This might be easy but searching through online cystic fibrosis support groups is a good place to start.
Not many Black people have cystic fibrosis but those that do often have a hard time getting diagnosed. Since the condition can progress to the point of severe organ damage, it’s best to start treatment as soon as possible. If you suspect that you have cystic fibrosis, document your symptoms carefully and keep talking to your doctor until you get your diagnosis.
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