Connecting with Other Cystic Fibrosis Patients and Families
Reviewed by: HU Medical Review Board | Last reviewed: September 2019 | Last updated: July 2020
Living with a chronic condition like cystic fibrosis (CF) can be complicated and difficult. The symptoms of CF tend to get worse over time. This can limit social connections - especially with frequent hospital stays. Additionally, like many chronic illnesses, the emotional strain can result in depression and anxiety.
Having friends who understand exactly what you are going through can ease the journey and give you the physical and emotional support you need to stay as healthy as possible. This support can be found through school or work friends, family, hobbies, national and local organizations, and online forums like the one here at cystic-fibrosis.com.
The Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation provides many opportunities for people with CF to find and support one another. In addition to the national office, 70 chapter and branch offices offer chances to volunteer, raise funds for research, build awareness about CF in the community, and meet others with CF.1
The CF Foundation sponsors free online events where people with CF can meet casually to share experiences, listen, and ask questions on everything from weight management to dating to career decisions to end-of-life issues. Another valuable service, CF Peer Connect, links people with CF (and caregivers) who are age 16 and older. CF Strides, the foundation’s main fundraising and awareness effort, generates millions of dollars each year to fund CF research through local 5K walks.1
Places to connect online
With only 30,000 people in the U.S. living with cystic fibrosis, it may be hard to find a fellow CFer who lives close by who also has similar interests. Plus, people with CF must stay at least 6 feet apart to prevent cross-infection of lung bacteria and viruses. This is where online communities can be invaluable. Some of the biggest, most active communities can be found here:
- Cystic Life evolved from a CF patient’s blog into a vibrant, positive community filled with questions, tips, ideas, experiences, and encouragement.
- CF Roundtable hosts several busy social media communities and is run by volunteers of the US Adult Cystic Fibrosis Association. Its newsletter covers topics like dating, organ transplants, and living and working with CF.
- CF Connect, a Facebook account sponsored by CF Roundtable, includes over 3,300 members, who discuss practical issues of living with CF such as travel and equipment.
- Cystic Fibrosis, another Facebook group, boasts over 27,000 members and honest discussions range from the friendliness of different hospitals to tattoos to PFTs.
- Cystic Fibrosis Mothers provides information for women with CF who want to get pregnant or who already have children.
Safety tips for meeting someone else with cystic fibrosis
People with cystic fibrosis must take extra precautions when meeting others with CF. That’s because people with CF easily pass germs to each other, the most serious being the pseudomonas and B. cepacia complex. This is why people with CF should always remain 6 feet apart and cover their coughs. Other tips for being around fellow CF patients without spreading germs include:1
- Avoid hand-shaking, hugging, or kissing
- Wash your hands frequently
- Don’t share eating utensils or drinking cups
- Avoid hot tubs and spas
- Perform airway clearance at different times in different rooms to decrease the chances of spreading germs
- Avoid jobs where respiratory infections are known to spread frequently such as daycare centers, elementary schools, and health care settings1
Your CF medical team
Your CF medical team should be able to connect you with fellow CF patients who live locally and would be willing to talk about their experiences. Remember, you’re not alone. Getting to know other people with CF can provide you with friendship, advice, and educational support.