Cystic Fibrosis Research Paper Outline

•Commitments
• Start by committing yourself
• Picture your life if you were to keep up with this commitment and how it will make you feel.
• Revisit your commitment daily
• When you mess up, apologize to your child, to take a positive step forward
• Make a small positive change every day
• Commit to taking care of yourself and staying centered
• Focus on loving the one you’re with
• Focus on staying connected and being a role model
• Focus on teaching emotional intelligence and meeting your child’s needs
• Focus on guidance rather than punishment.
• Focus on self-acceptance and compassion.

Cystic Fibrosis
• Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults.
• Cystic fibrosis effects

many aspects of the body, but mainly affects the digestive system and the lungs.
• The constant infection in the lungs, with destruction of lungs and loss of lung function, eventually causes death in the majority of people who have cystic fibrosis.
• Typical complications are: difficulty in digesting fats and proteins; vitamin deficiencies due to loss of pancreatic enzymes; and progressive loss of lung function.

• It is estimated that one in every 3,600 children born in Canada has cystic fibrosis.
CAUSES OF CYSTIC FIBROSIS
• Cystic fibrosis is a genetic disease that occurs when a child inherits two abnormal genes, one from each parent.
Challenges
• The diagnosis that your child or loved one has cystic fibrosis can come as a huge shock.
• Experiencing a wide range of emotions, including denial, anger or even guilt are very common
• These are all natural responses to such an emotional and frightening.
• Raising a child with a chronic medical condition may cause it to be hard for them to live a normal life
• Preparing them for entering the adult world can seem like an impossible task.
• Parents may encounter feelings of depression and anxiety while processing emotions such as guilt; fear of their child being alone or with a partner, etc.
• Because children with cystic fibrosis can need a lot of special care, other siblings in the family can feel left out or neglected.
• Some parents try to protect their other children by not discussing certain aspects of cystic fibrosis, which can in turn lead to feelings of alienation or

anxiety.
• Discussing concerns or worries, or even just sharing a laugh with someone who has been in the same position, can help you overcome some of the obstacles you face.
Strategies
• Knowledge: Ask, study, and read beneficial information about cystic fibrosis. Every child with cystic fibrosis is different; don’t trust everything you see online. The media tends to focus on unrealistic stories rather than average, daily situations.
• Write down questions in a notebook as they pop into your head.
• Try keeping a notebook with you, and be sure to record everything
• Support: Get involved with support groups. Try connecting with other patients and families.
• Surround yourself with people who can guide you. Talk about the situation with your family and friends. They will be better able to give you the support you need and wish.
• Plan: Getting through the day with Cystic Fibrosis can be overwhelming.
• Get familiar with all of the things that will be needed to treat Cystic Fibrosis.

Children’s development with Cystic Fibrosis
Changes for Boys
• Puberty normally starts at around 12, but patience with cystic fibrosis get a lot of chest infections or have trouble gaining weight, their body may delay puberty until it can cope with it.
• Sooner or later, the body will be having growth spurts, voices will be getting deeper and hair will be growing on the body.
• All of these things take up so much energy that your body just has to wait until it’s ready.
School Life
• School does not have to be terrible; it is up to you to make it as fun as possible.
• You may find Cystic Fibrosis causes a few problems.
• A lot will depend on how understanding your school and your friends are with the disease.
• Having Cystic Fibrosis might mean that you miss a lot of school days due to poor health or hospital admissions.
• This might make your school life seem like a struggle and finding yourself behind with work.
• If the school knows about your problems, it will make things easier.
• Cystic Fibrosis can be a reason why people might be targeted as weak it is important to speak up about any bullying. Considerations/Arrangements

School years
• Cystic fibrosis does not affect intelligence. Most children with Cystic Fibrosis attend normal schools. It is important that teachers and other staff in the school know about CF
• Developments or changes in treatment are especially important when your child changes teacher or school. Teenagers and leaving school
• Teenage years are especially hard for young people with cystic fibrosis, especially if the condition causes them to mature later than their friends.
• The full range of education and employment should be available to any young adult, depending on their intellectual and physical boundaries. The future
• Only 30 years ago, the outlook for a baby born with cystic fibrosis was very poor. Today, young adults with CF are living into their thirties, forties, and beyond and these people are leading active and fulfilling lives.
• It is likely that the quality and length of life will continue to improve as a result of current research. New treatments, which were supported by the Cystic Fibrosis Trust, and made available over ten years ago, are now bearing fruit.