About Cystic Fibrosis

Getting Help and Support for Cystic Fibrosis

While the news of their child being diagnosed with a progressive and self-limiting disorder may at first be disheartening, parents can find adequate help for cystic fibrosis management. Nowadays, medications and medical interventions are available to improve the quality of life of CF patients and allow these patients to live normal live as possible. Support from family members and friends are also helpful along with constant coordination with doctors, teachers and specialists to ensure adequate social and care support.

Here are a few ways parents and patients can find emotional help for cystic fibrosis:

Learn
One of the first things that parents need to do is learn about the disease as much as possible. Parents can learn to cope with their child’s disorder by being well-informed and educated with various medical help for cystic fibrosis patients. Doctors and CF Foundation accredited care centers can provide guidance regarding specific treatment plans for their child.

Support Group
Joining a support group for parents of children with CF can provide

emotional support and an avenue to express how they feel as they talk with other parents who are dealing with the same issues. Teenagers who have this condition can also join cystic fibrosis groups to meet and talk with other teens with the same condition. Learning how others cope with the disorder can help both parents and their kids find solutions that will work for them. Online communities also provide help for cystic fibrosis patients through research information and group support.

Communicate
Parents can help their child by talking about their condition as soon as possible and in a simple and straightforward way. Explaining their condition can help your child understand why eating healthy, taking supplements and having chest PT are all important for him or her. This can also teach your child to talk about cystic fibrosis to other people without being embarrassed or ashamed.

Encourage
Help for cystic fibrosis patients also include providing an environment with a sense of normalcy. Encouraging your child to go to school and participate in sports activities and social events can help the child to become independent, confident and self-reliant. This could also enable him or her to live life to the fullest despite their condition.

Psychological Support
Teenagers with CF often feel hindered and limited by their illness. Teens may feel embarrassed by their physical stature, cough or having to take medications. Some would react and pretend they don’t have this condition by acting rebelliously. Parents can provide support by boosting their child’s confidence and by not being overly rigid. Counselors, psychologists and social workers can also help parents when teens tend to resist treatment.

CF Foundation
Parents can also look for organizations where cystic fibrosis help to patients are provided through research, funds, information and referrals. Some of these recognized organizations include Cystic Fibrosis Foundation, Cystic Fibrosis Research, Cystic Fibrosis Worldwide and KidsHealth for Parents, Children and Teens.

Social Support
Young adults with CF that are considering marriage and family can get help for cystic fibrosis through resources about relationships and issues about marriage. Genetic counseling, fertility evaluation and financial counseling are available for people with CF. Family and peer support are also essential during this stage. Concerns can also be brought up with their doctors or a cystic fibrosis social worker.

Disclaimer: This website provides general information about cystic fibrosis and in no means should be taken as a medical or health advice. Please consult your doctor before acting on any of its information.