- What is Cystic Fibrosis
Cystic fibrosis is a life-shortening inherited disease, affecting over 10,000 people in the UK. It is something you’re born with and most cases in the UK are now diagnosed soon after birth. Both parents must carry the faulty gene and 1 in 25 people carry this gene. When this happens and two parents have a baby there is a ¼ chance the child with have Cystic Fibrosis.
Cystic fibrosis has many symptoms and affects many different organs. Poor lung function, repeated chest infections, and poor weight gain are common with the condition. This is usually treated with medication and physiotherapy but in my case, nutrition, exercise and some medication.
The digestive system is affected in the pancreas because of a build up of thick, sticky mucus which blocks the ducts, reducing the amount of insulin produced and stopping digestive enzymes from reaching the intestines to aid digestion. This can lead to a poor physical state because you are unable to absorb nutrients.
Medication can help such as digestive enzymes that most people with cystic fibrosis take with each meal to help digest food. Some people develop cystic fibrosis related diabetes because of poor insulin production.
Other parts of the body that are affected:
One in every ten babies get a bowel obstruction called meconium ileus at birth or within the first few days of life. This is a bowel blockage which requires an urgent operation to relieve and bypass the blockage.
People with cystic fibrosis are prone to developing bone disease (thin, brittle bones) due to a lack of nutrition.
Cystic fibrosis can cause fertility problems. In most men with cystic fibrosis the tubes that carry the sperm are blocked, causing infertility. The nutritional issues associated with cystic fibrosis can affect female fertility because underweight women are more likely to have irregular menstrual cycles and thicker vaginal mucus. Women with cystic fibrosis do produce healthy, fertile eggs.
Cystic fibrosis can also cause the blockage of small ducts in the liver, leading to liver disease. Although this only happens in about eight per cent of people with cystic fibrosis and can sometimes be managed by drugs, it is a serious health risk and could require a liver transplant.
Each week five babies are born with cystic fibrosis, and two people die.
Because people are living longer with Cystic Fibrosis more health implications are occurring.
- CF-related diabetes (CFRD) affects more than 30% of adults with cystic fibrosis.
- Low bone mineral density (BMD) thinning bones are a well-documented, with reduced bone mineral content found in people of all ages. Low BMD is common in adults with cystic fibrosis.
- Osteoporosis – a disease of the skeleton that causes a deficiency of bone mass and a reduced bone density.
- Joint pain and arthritis – the likelihood of joint pain and arthritis increase as people with cystic fibrosis get older. Five to ten per cent of people with the condition will develop these symptoms
- Risk of nephrotoxicity and ototoxicity to kidneys and hearing. People with cystic fibrosis require Are prescribed a big amount of antibiotics during their lifetime, which can has a toxic impact on the kidneys and hearing.
- Sinusitis – acute and chronic sinusitis is common in people with cystic fibrosis. Symptoms can include blocked nasal passages, headaches, and a cough that is made worse by lying down. Sinusitis can usually be controlled with medications.
- Nasal polyps – people with cystic fibrosis have an increased risk of developing nasal polyps; tissue growths that develop inside the nasal passages and sinuses. Large polyps can cause a blocked or runny nose, and a loss of smell or taste. Like sinusitis, nasal polyps can usually be controlled with medications.
- Distal intestinal obstruction syndrome (DIOS) – previously known as meconium ileus equivalent (MIE), DIOS is a condition that is unique to cystic fibrosis. DIOSS causes blockages in the stomach, causing symptoms such as colicky stomach pain, bloating, nausea and weight loss. In most cases DIOS can be controlled with medication.
- Acid reflux – a common occurrence in people with cystic fibrosis, stomach acid can be harmful to the oesophagus (gullet) and can trigger coughing. This can be treated with anti antacids in most cases. Surgery is an option in more severe cases.
- Gastro-oesophageal reflux disease (GORD) – a condition where stomach acid leaks from the stomach into the oesophagus (gullet). This can be treated with anti antacids in most cases
All these symptoms are taken from information from NHS and Cystic Fibrosis websites. A lot of the information out there is negative and although more positive information is getting pumped out there I still believe it needs to change. That’s what I hope to do. Imagine being a parent and reading the symptoms of Cystic Fibrosis. It would really scare you. My parents never took much notice of the information and treated me as an individual. I also believe a lot of the symptoms caused are from poor nutrition and side effects from medicine. I am prescribed around 30 pills per day and hardly take any. After researching a lot of the side effects of the pills I would always look to natural replacements from food first. That in my opinion is why I am doing so well. Some of the foods and medication recommended are also related to the side effects supposedly caused by CF. A lot of children get treated as sick from the moment they are born. Lots of tablets, hospital visits and can be held back from normal healthy activities. I have done the opposite, eating healthy and pushing physical limits. In my blog I will go into this in more detail but I want to spread more positive awareness. I want people to create a positive mindset and a healthy body. Sometimes you can break free from the negativity and do great things with your mindset and belief. You do not want to accept illness and let it control your mind. Live your own life and do not trade your life for the condition. Life is sometimes un-pleasant and it can sometimes leave scars. However scars are a healing process so go on bravely. To live is to create a life of happiness and as much potential as possible. You never know how much time you have so value it and enjoy it.