Cystic Fibrosis - Support Groups

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Last Updated on Aug 17, 2016
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Cystic Fibrosis Support Groups

Living with CF can produce immense fear, frustration, anxiety, depression, and stress. It is therefore very important for the patient and caretakers to keep in constant touch with the medical team and discuss about things that bother them or about things that they may want to learn.

Seeking help from a professional counselor might also be a good idea.

It is considered very useful to learn about the disease and to be aware of the methods that might help in living with it.

Here are a few tips that would help a person to cope with CF -

  • Monitoring by an expert team at least once in 3 months is mandatory
  • Take a balanced diet that includes fruits, veggies and grains
  • Exercise regularly. Do chest therapy as directed
  • Drink plenty of fluids
  • Avoid smoking/excessive alcohol
  • Wash hands to control infections
  • Take medications and high-salt diet as prescribed by the doctor
  • Normal sex is possible but infertility may be a problem. Consult a doctor if pregnancy is planned. Several ART techniques are available that may help a person with CF.
  • Consult a doctor if you have the following signs:
    • Persisting Fever
    • Blood in the mucus
    • Increased quantity of mucus
    • Change in the color / consistency of mucus.
    • Decreased appetite
    • Feeling extreme tiredness
    • Dark green vomit
    • Severe constipation / diarrhea
    • Severe abdominal pain
Please remember that people with CF can lead normal lives if they lead a lifestyle best suited for them and follow the advice of their health-care providers.

Joining a patient support group may help to provide emotional support to a person living with cystic fibrosis, ease their anxieties and offer relief to their well-founded fears.

Never forget to lend support to a loved one with CF. They really need it!

United State of America (USA)

1. Cystic Fibrosis Foundation

http://www.ccf.org/

2. Cystic Fibrosis Research, Inc (CFRI)

http://www.cfri.org/educate.shtml

3. Boomer Esiason Foundation

https://www.esiason.org/

United Kingdom (UK)

1. Cystic fibrosis trust

www.cysticfibrosis.org.uk

2. Chloe Cotton Trust Fund

https://en.wikipedia.org/w/index.php?title=Chloe_Cotton_Trust_Fund&action=edit&redlink=1

India

1. Reaching Out Foundation

http://www.reachingoutfoundation.org/

References:

  1. Cystic Fibrosis: Prenatal Screening and Diagnosis - (http://www.acog.org/~/media/For%20Patients/faq171.pdf)
  2. How Is Cystic Fibrosis Diagnosed? - (https://www.nhlbi.nih.gov/health/health-topics/topics/cf/diagnosis)

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As the above article mentions, cystic fibrosis is an autosomal recessive disease and testing for carrier status has been available, but screening policies differ widely. An interesting screening study between neighboring towns in Italy was reported recently. This study reports on a natural experiment which arose in north eastern Italy when Veneto adopted a conservative carrier testing policy while next door in the Padua area, much wider testing was carried out. In both regions babies are also tested for CF at birth, and in the Padua area there were half as many as in the Veneto area. In other words, couples do make reproductive choices based on their carrier status.
http://jama.ama-assn.org

Cystic fibrosis in India is rare. Also there is less awareness among medical staff. Apparently frequency of common mutation F508del in Indian children is between 19% and 34%. The cystic fibrosis wordlwide is willing to fund projects for two years in India. There is an appeal on thier site - just google cystic fibrosis wordlwide india and see the response.

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