Cystic fibrosis, also called cystic fibrosis, is an incurable hereditary disease. People with cystic fibrosis have sticky mucus that causes blockages and mucus accumulation throughout the body. This can cause inflammation, especially in the lungs. The pancreas and liver also suffer, because the thick mucus causes scars here. In addition, the mucus cannot remove bacteria and dust particles, but it can also no longer supply digestive enzymes to the intestines. This is how the problems slowly pile up. A lot of research is being done into cystic fibrosis. It has also been discovered that two substances, namely genistein and curcumin, can sometimes reduce cystic fibrosis and the symptoms associated with it. This method has indeed helped some people with cystic fibrosis.
Exact cause of cystic fibrosis
Cystic fibrosis is a hereditary disease caused by an error in the gene that produces our CTFR proteins. CTFR proteins act as gates in our cell surface that regulate the transport of chloride into and out of the cells. Sometimes these protein gates can no longer be produced (almost) at all, which is the case with cystic fibrosis of classes 1, 2 and 5. It is also possible that the protein becomes a poorly functioning gate (especially classes 3 and 4). For example, the gate does not conduct the chloride properly, cannot be opened properly or remains on the cell surface for too short a time. This causes too many chloride ions to remain trapped in the cells. This also causes too much water to remain in the cells. This disrupts the composition of the mucus very much: it becomes too thick and tough.
How was genistein and curcumin discovered to work?
Genistein is a flavonoid from soybeans. Flavinoids are substances from plants that the body considers mildly toxic, causing the body to activate its own antioxidant systems. They therefore have positive effects on health and are widely researched. There are several studies in the scientific literature in which genistein was able to improve the functioning of the CFTR protein gates. Perhaps other flavinoids can also have this effect, but genistein has been most researched. For example, in a 1997 study, genistein appeared to increase the opening time of certain gates. There are also several studies of curcumin, an anti-inflammatory substance from turmeric, in which the protein gates functioned better after administration. Interestingly, genistein and curcumin may work synergistically according to a 2011 study. Separately they may do a little bit, but combined they work together and enhance each other’s effects. If genistein alone gives 2% improvement and curcumin 1%, combined they might give a 10% improvement! Together they may also strengthen the effect of certain cystic fibrosis medications.
The theory is that genistein/curcumin may be able to bind to the CTFR proteins and thereby partially manipulate their gates. It is also possible that they suppress other substances that prevent the CTFR protein gates from doing their job properly. Underlying mechanisms are not yet exactly known. The result is that the gates allow more chloride ions to flow out of the cell, which also causes more water to flow out of the cell. This benefits the quality of the mucus.
Do many people with cystic fibrosis now use these substances?
Many people with cystic fibrosis have started using curcumin and genistein supplements because of Samantha Schut’s story. She noticed that when she gave her son with class 3 cystic fibrosis soy-based breast milk (he responded to normal breast milk), he did slightly better. After looking around on the internet, she quickly found the link between genistein and cystic fibrosis. She also came across studies on curcumin and cystic fibrosis and decided to give it to him too. At one point she decided to give both substances in supplement form. She did not yet know that the two substances could work synergistically. In any case, her son improved considerably and she therefore started a site to talk about her experiences. Slowly more and more people with cystic fibrosis are starting to try the substances. The safe guidelines for curcumin are 20 mg/kg/day and for genistein 1 mg/kg/day (for a person weighing 60 kilos, 1200 mg curcumin and 60 mg genistein per day). The curcumin supplement should contain black pepper as it increases its absorption. It is best to divide the dose over the main meals (for a person weighing 60 kilos, 400 mg curcumin and 20 mg genistein per main meal). This sometimes requires breaking open and splitting the capsules. The substances are both fat-soluble, so eat some fat with your meal, because that increases absorption. In young children it is best to stick as close as possible to the safe guidelines and pay close attention to whether there are any side effects. However, adults may want to increase the dose slightly if that feels good.
Premature conclusions
However, all these results, conclusions and experiences must be treated with caution. Not all studies saw effects and it has only been scientifically tested in test tubes (in vitro), not on real people. The classes tested on are mainly classes 2 and 3. Whether it works equally well for everyone with these classes is absolutely impossible to say because the cells of every person with cystic fibrosis are slightly different. Each person’s intestines are also different, meaning that some absorb substances better than others. It is also not yet possible to say whether it can help the other classes. It is certain that curcumin and genistein are very safe substances in the recommended doses. Curcumin has been eaten in India for thousands of years and is known for its anti-inflammatory effect. Genistein has also been known for some time because this substance may have anti-cancer effects. Consult your doctor before taking these two substances. Sometimes they can interfere with certain medications. Moreover, curcumin cannot be used for gallstones and immediately before operations, because it reduces blood clotting. Genistein has a slightly estrogenic effect, so those who are sensitive to hormone-sensitive cancers may want to avoid using this substance.
