Use these ideas as a guide when your loved ones ask what they can do to help. Ask if there is anything you can read to learn about CF. Use the internet to learn more. The Cystic Fibrosis Foundation www. Ask what you can do to give support. Accept the pain and sadness they may be feeling. They may be dealing with hope, denial, grief, and fear. For those with CF, there is no such thing as "just a cold.
They can lead to more severe infections for the child with CF. When you visit the family, wash your hands when you enter their home. If the family with CF is coming to your house to visit, and someone in your house is ill, don't wait until they get there to tell them. Call them. Give them the option to stay home. Everyone in the family needs yearly flu shots. Daily CF care varies and may include enzymes, antibiotics, vitamins, and other medications.
Ask questions. Have your loved ones show you how to give enzymes, medications and respiratory therapy. Maybe you could care for the child and let the parents rest. Don't neglect routine care like check-ups and immunizations. Participate in CF fundraisers. By joining the search for a cure, you give hope to the family and lessen their sense of aloneness.
Most people have not heard of CF or know little about it. Teach others about CF and the need to find a cure.
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- Living with CF.
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Teach others about infection control. Involve others in CF fundraisers. Families hearing about people who have died from CF does not help. Lung transplants may extend the life of a CF patient, but they are not a cure for CF. What you can do is check your license to make sure you are an organ donor. While parents must hope for the best for their child, they live with the fear of the worst.
Think about the impact of a CF-related story before you share it. Children need to be treated "normally. Children with CF need limits, just like their non-CF peers.
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Some may have mild lung disease, others may be hospitalized often for lung, sinus, liver, and GI problems. Many things decide the course of the disease for each person.
The brothers and sisters of children with CF often feel left out, due to the extra care that the child with CF needs. Some feel jealous of the time parents spend with the other child doing treatments and going to appointments. Give special time to the siblings to help them cope with their doubts and fears. Call before you visit, in case the child or parent is trying to rest.
If you are sick, don't visit. Don't bring your kids, if they are sick. Ask about special precautions before you visit. Wash your hands when you enter the room. Offer to stay with the child so the parent can rest. Arrange a play date for the sibling, who may be feeling left out. Help with shopping, washing, and cleaning. People with CF work daily to slow lung damage.
Do not expose a family coping with CF to cigarette, cigar, or pipe smoke. Second-hand smoke is bad for all. For people with CF, it's worse. CF is a genetic disease. If you are related by blood to someone with CF, it is possible that you can carry the gene.
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If you're thinking about having children, knowing your status makes a difference. Also, health outcomes are improved with early diagnosis. People tend to offer help right after diagnosis. Coping with CF is like riding a life-long roller coaster. The best help is long-term help. On This Page. What Is Cystic Fibrosis? Additional Resources.
Cystic Fibrosis: A Guide for Patient and Family Best Sellers Rank : #4
Glossary of terms. Here are a few that you may find helpful in your search for additional support. The CFLF assists in providing avenues toward healthy and active lifestyles through recreation, thereby empowering and educating people with Cystic Fibrosis on the critical psychological, social, and emotional connections between their lifestyle and their health.
Our well defined mission is to bring Cystic Fibrosis CF to the forefront by:. Rock CF is a community Thousands strong changing the face of what living with Cystic Fybrosis looks like and giving those living with CF the tools to not only survive, but thrive. We focus on:. Skip to content The cystic fibrosis community is supported by many organizations focused on different aspects of life with cystic fibrosis.
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The purpose of The Bonnell Foundation is to provide tools to navigate the difficulties of living with CF. We strive to connect families with resources through their CF journey. With our website, Roadmap to CF baskets, medical and academic scholarships, we hope to equip families with a roadmap to guide their way. The Cystic Fibrosis Association of North Dakota CFA devotes its time and financial resources to helping North Dakotans with cystic fibrosis CF and their families by: Assisting with the costs of medications and medical equipment Providing travel assistance for medial appointments Coordinating support group meetings Providing matching funds for organ transplant expenses Providing college scholarships so young people with cystic fibrosis can focus on studies, and not compromise their education because they need jobs to support their educational endeavors Informing the public about cystic fibrosis and current research Lobbying to protect individuals with CF and their families from undergoing undue hardship and ensuring their right to receive health care coverage.
The financial assistance is limited to the patients and families that visit qualified cystic fibrosis clinics. Cystic Fibrosis Research, Incorporated funds research, provides educational and personal support, and spreads awareness of cystic fibrosis CF , a life-threatening genetic disease. As one reviewer said, this book "is the only complete answer book for everyone living with the disease.
It is an indispensable resource for families of children with CF, adolescent and adult patients, and physicians, nurses, respiratory therapists, and social workers involved in the care of CF patients. When David is not working with patients or doing CF research, he spends time with his wife and son, swimming, reading, running, or knitting, though usually not at the same time.
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