|By PR Newswire||
|January 15, 2013 11:00 AM EST||
Groups provide support for Pulmonary Fibrosis patients, caregivers, families
CULVER CITY, Calif., Jan. 15, 2013 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today its partnership with Breathe Support to provide online support groups for Pulmonary Fibrosis (PF) patients, families and caregivers.
Breathe Support provides online forums for PF patients, caregivers and families and those dealing with the grief of their loss. There are separate groups for PF patients who are investigating or awaiting lung transplantation.
Breathe Support offers the support of a group with the ease of use of an online service. Thousands of patients with PF have accessed these groups and it is an important offering given that in-person PF support groups are not available everywhere and the time and ability to travel to meetings can be a limiting factor for patients, as well. By exchanging support in this manner, most patients are guaranteed the opportunity to talk with others. The groups have evolved over time and they continue to grow and change based on the needs of the users.
"We are pleased to partner with Breathe Support to provide a service that appeals to the needs of our patients," said Mishka Michon, Chief Executive Officer of the Coalition for Pulmonary Fibrosis. "The online access point gives another option to patients who suffer from PF and often have limited mobility and require increasing amounts of oxygen and often experience much difficulty in getting to an in-person support group setting. It also provides support for patients, families and caregivers in a convenient forum for busy lives and schedules."
Breathe Support provides a safer online environment for patients, families and caregivers by operating only with its memberships and is not held as an "open" forum like many online social media sites like Facebook and others. The Breathe Support online groups are populated by members who are approved to join the groups and are monitored and moderated by Breathe Support leaders.
"We're here to support one another as we learn from each other about PF. This is a safe environment where patients can share stories, concerns, fears, etc. about their PF diagnosis and living with PF," said Taleena Koch, owner of Breathe Support and a group moderator. "This is a forum for members and their thoughts and suggestions are important and beneficial to the group."
Available Online Support Groups:
Caregiver Forum – This forum is for those who are taking care of a person suffering from PF. The group is also open to any family member or friend of someone with PF so they can get a better sense of the process for caregivers and share information on how to best be of help. Link to Caregiver Forum: http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/
Patient forum – This forum is for patients who are diagnosed with PF. Link to Patient Forum: http://health.groups.yahoo.com/group/Breathe-Support/
PF Information Forum – This is a combined group of patients and caregivers where they can share concerns and challenges. The group is also open to any family member or friend of someone with PF so they can get a better sense of to expect. Link to PF Information Forum: http://groups.yahoo.com/group/Breathe-SupportInformation
Transplant Forum – This exchange is for those who are investigating lung transplant as an option and who may be helped in their decision-making by information shared by others. It is also open to caregivers and family members of anyone considering lung transplant. Link to Transplant Forum: http://health.groups.yahoo.com/group/Breathe-SupportLungTransplant/
Grief Forum – This forum is to help those who have lost a loved one to PF. Link to Grief Forum: http://health.groups.yahoo.com/group/Breathe-SupportGrief/
For further information about these support options, please contact the CPF at [email protected].
Breathe Support disclaimer: All content contained on, or available through, this online support group, is for general information purposes only and is not intended as, nor should it be considered as a substitute for, professional medical advice, professional psychological advice, diagnosis or treatment. Do not use the information on, or available through, this online support group for diagnosing or treating a medical or health condition. The Coalition for Pulmonary Fibrosis (CPF) does not take responsibility for the efficacy of the information being exchanged here – the remarks included represent information shared for general purposes based on the personal experiences of those using the online support group. Group members are encouraged to contact their physician for any specific information related to any condition or treatment.
The Coalition for Pulmonary Fibrosis works on a national scale to support research for a cure and to assist patients. For information or to support this important work, please contact the CPF at 1-888-222-8541, or visit www.coalitionforpf.org or visit us on Facebook or Twitter.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 26,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis
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