Cystic Fibrosis Support Group
Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.
deleted_user
Hi, I just came back from the most AMAZING week at CF Retreat, in Northern California. I had to share because it was so cool. CF Teen and Adult Day Retreat is held every summer for people with CF who are over age 15, and don't culture MRSA, b.cepacia or pan-resistant pseudomonas.It is open to family and significant others too. There were about 30 people, about half with CF- of those with CF, about half had transplants. We had fun activities like a scavenger hunt, kayaking, volleyball and art therapy . But also we have deep, amazing support groups where we share so much not only about living with cf, but about life in general- relationships, goals, school/work, dreams, ect. It is truly a place where people with a common bond share at the deepest level of love and understanding, where there is a universality of experience and a maturity of insight and wisdom that is shared among all. I left feeling loved and understood,and my "gas tank" is full so I can deal with CF again for the rest of the year. I definitely plan to come back and encourage anyone needing support and wanting to have fun to join next year- the first week of August in 2009. There is so much talk that pwcf shouldn't hang out because of cross infection risks, but there are so many safety measures at the Retreat I felt so safe. All attendees have a pre-screening sputum culture, we can't sit next to each other, we have separate rooms and bathrooms, we have purell and chlorox wipes and masks/glove available, and we have alot of activities outdoors. Whatever risks exists is worth it to me because of the emotionally and socially healing energy that I get from this group. I don't laugh or cry much except at retreat. We love, we remember, we create, we express and we get great meals and exercise. We also have educational workshops, like a doctor from stanford coming to talk about sinus disease in CF. We hope others out there can consider joining this amazing experience in future years. Full scholarships are available to assist with travel and accomodations. For more information, see www.cfri.org and check out the CFRI Teen and Day Retreat. Thanks for reading this.
ANA
Anana1872@yahoo.com
ANA
Anana1872@yahoo.com
Posts You May Be Interested In
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
~hugsnkisses