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Cystic Fibrosis FAQs and Resources




Below are some Frequently Asked Questions about Cystic Fibrosis

 

1. Can my child with CF go to school?

 

Children with CF can freely attend school and college without any limitations. Physical activity and participation in sports  is encouraged as much as possible for CF patients to keep their lungs healthy.

 

For details about specific issues that need to be addressed at school for your child with CF, please refer to “Talking with your Child’s School about Cystic Fibrosis.”  

 

2. What research is being done to find a cure? What new treatments are available for cystic fibrosis?

 

This is an exciting time for CF research as new medicines are being developed to combat CF. There are many trials and research studies currently enrolling patients and you are encouraged to contact Cathy Van Wagnen, RN, CCRC, CF Research Coordinator at Children’s Hospital of Michigan for more information.  Cathy can be reached at (313)-745-4737 or  cvanwag@med.wayne.edu.  

3. Does my child have to come to a CF clinic or can they go to a pediatrician?

Children with cystic fibrosis will require their usual preventive care, immunizations and care for other minor (non-CF) illnesses throughout childhood. They should be followed by their pediatrician for these and for taking care of other acute illnesses as well. For management of CF and its related complications/issues, it is best to continue follow up at your CF Center where there is specialized staff that is trained to meet your child’s medical needs. Follow up at the CF Center on a regular basis (once every 3 months) is recommended by the Cystic Fibrosis Foundation and helps to ensure that your child with CF remains healthy. These visits are over and above any visits that your child may have at the pediatrician’s office.  In other words, being seen at your pediatrician’s office cannot replace the CF clinic follow up appointments.

 

4. Can my child with Cystic Fibrosis be involved in sports?

 

Involvement in sports is recommended for children with Cystic Fibrosis as it helps to improve airway clearance and further improve their lung function. Exercise as a form of secondary airway clearance therapy can supplement any other strategies being used for keeping lungs clear.

 

5. Can my child with Cystic Fibrosis have a cat or dog?

 

Children with Cystic Fibrosis can have a cat or a dog as long as they are not allergic to pet dander.  Most children enjoy the company of a pet and it also provides them with an opportunity to go out and play with the pet and get some exercise for themselves at the same time.

 

6. When do I tell my child about his/her diagnosis of Cystic Fibrosis disease?

 

It is important to discuss with your child his/her diagnosis of Cystic Fibrosis as soon as they are old enough to understand. It is important to be realistic and explain information about therapies and how they can change the way their body functions when they have CF. If children are not informed about their illness/diagnosis it may cause more pain and misery and possibly greater difficulty in adapting. It is also important to get them involved very early on in taking charge of their therapies and medications to help them achieve independence and have them take ownership of the disease. This also helps to generate motivation/a fighting spirit from an early age, which is so crucial for helping the children pull through rougher patches when their disease activity flares up. Several resources (books, videos) are available to aid in providing information to children about CF in an age-appropriate manner.  


Online Resources

1)  Cystic Fibrosis Foundation (CFF)

2)  Michigan Department of Community Health (MDCH)

3)  Michigan Pulmonary Disease Community, Inc. (MPDCI)

4)  Cystic Fibrosis Lifestyle Foundation (CFLF)

5)  Let’s Rock CF (Former Children’s Hospital of Michigan patient Emily Schaller’s website related to advocacy and resources for CF patients).

 

Recommended Reading List:

1)  Cystic Fibrosis Foundation - An Introduction to Cystic Fibrosis for Patients and Families, Fifth Edition. (Available as a .pdf file on CFF website).

2)  David M. Orenstein – Cystic Fibrosis: A Guide for Patient and Family

3)  Diane Shader Smith - Mallory’s 65 Roses (specifically targeted for children).

4)  Isabel Stenzel Byrnes, Anabel Stenzel – The Power of Two: A Twin Triumph over Cystic Fibrosis.

 

Recommended Videos and Documentaries:

1)  Cystic Fibrosis Foundation - An Introduction to Cystic Fibrosis for Patients and Families (Video).

2)  Becoming Christopher

3)  Christopher Chronicles

4)  Jeremy Bishop Explains CF

5)  Knowing and Growing – Your CF and You

Events

 

North American Cystic Fibrosis Conference

Held annually at various locations across the United States, it brings together everyone involved in CF care (be it research, clinical care, and even parents of children with CF) from CF centers across North America. It provides updates on the latest research being done to find a cure for CF and allows the professionals a meeting ground to discuss and share their experiences, ideas and research findings.

 

Annual CF Family Education Day

This is a local event held by the Children's Hospital of Michigan CF Center for the benefit of the parents taking care of children with CF. It provides parents with information about the Center’s overall performance on the annual report obtained from Cystic Fibrosis Foundation (CFF) and quality improvement and other updates taking place at the CF Center. It also gives parents an opportunity to meet with and network with other parents whose children are also followed at the CF center. Even though children with CF are not allowed at this event (because of infection control policies), it provides families with a forum to raise important issues and allows them to ask questions related to CF care to further enhance their knowledge. The event is held every year, within 3-4 weeks after the North American Cystic Fibrosis Conference.

 


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