Cystic Fibrosis - Support Groups

Creator: Dr. Lakshmi Venkataraman
Keywords: Cystic Fibrosis, Support Groups

Medically Reviewed by Dr. Sunil Shroff, MBBS, MS, FRCS (UK), D. Urol (Lond) on May 10, 2021

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:

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

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