Question by Maddie L: How effective is the treatment for Cystic Fibrosis and how does it contribute to the life of a patient?

Best answer:

Answer by HARD4ROCK
After you or someone you love receives a diagnosis of cystic fibrosis, you’re likely to experience many emotions, including anger, concern, guilt and fear. These issues are especially common in teens. All are normal responses. Talking openly about how you feel can help. It may also help to talk with others who are dealing with the same issues.

That might mean joining a support group for parents of children with cystic fibrosis. Older children with the disorder may want to join a cystic fibrosis group to meet and talk with others who have the disease. Psychologists are often an important part of the care team as the child approaches the teen years.

Support groups aren’t for everyone. But often members of these groups can share information, experiences and solutions about the unique challenges associated with cystic fibrosis. If a support group isn’t available in your area, you might consider Cystic-L, an e-mail support group for people with cystic fibrosis. Or, you may want to talk with another family who is dealing with the disease. Learning how others meet certain challenges may help you find solutions that work for you.

Helping a child live normally
It’s natural for parents to want to protect their children, especially when the child has a chronic illness. But the best gift you can give a child with cystic fibrosis is a sense of normalcy. Most children with cystic fibrosis go to school, participate in sports and have active social lives. In time they may graduate from college and embark on careers, and many marry and raise families. Encouraging your child to be independent and self-reliant can help him or her have the fullest life possible.

Preparing for the future also is key. Parents of a child with cystic fibrosis need to plan for their child’s education and financial future, just as they would for any other child.

Still, no matter how hard parents try to make life normal, children with cystic fibrosis often feel different. Even young children soon learn that not everyone has chest physical therapy or takes a handful of pills before each meal. But teenagers, who can be agonizingly self-conscious anyway, may feel their difference the most.

You can help your child by talking about cystic fibrosis as soon as possible. Just what you say will depend on your child’s age and personality. In general, help your child understand what cystic fibrosis is and why eating a healthy diet, taking enzymes and having chest physical therapy are important. Also teach your child to talk to others about cystic fibrosis in a straightforward way. Have your child explain that coughing helps clear the lungs and enzymes help digest food.

Concerns of teenagers
Teenagers, especially, may feel embarrassed about their cough, their slenderness and their medications. Most of all, they may worry that their illness will keep them from having a normal social life. And in fact, all the turbulence and difficulty of adolescence is compounded for teenagers with cystic fibrosis. Yet many teens find that being frank and open about cystic fibrosis can ease some of their concerns.

Still, adolescents understandably may want to pretend they don’t have cystic fibrosis. They may rebel against dietary restrictions, treatments and medications. And like other teenagers they may start to smoke. But normal rebelliousness can be life-threatening for young people with cystic fibrosis. If your teen is resisting treatment, a counselor, psychologist or social worker may be able to help.

At the same time, you can boost your child’s confidence and sense of normalcy by not being overly rigid. Don’t be concerned if your child misses a chest therapy session now and then in order to participate in some activity. The goal is to help your child learn to live with cystic fibrosis, not to make it a way of life.

Marriage and family
Young adults with cystic fibrosis can’t always be as carefree and spontaneous in their relationships as other young people can. But many resources are available that can make dealing with issues of marriage and intimacy easier. These include genetic counseling, fertility evaluation and financial counseling. Be sure to discuss your concerns with your doctor or a cystic fibrosis social worker.

Risk factors
The greatest risk factor for cystic fibrosis is a family history of the disease. If both you and your partner come from families with cystic fibrosis, then each of your children has a one in four chance of having cystic fibrosis.

Your risk is also greater if you’re of Northern European ancestry. In that case, you have a one in 29 chance of carrying the gene. Among other ethnic groups in the United States, Hispanics have a one in 46 chance of carrying the gene, blacks have a one in 65 chance and Asian-Americans a one in 90 chance.

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