As a Pulmonary Fibrosis Advocate for Patients and Families, my goal with this site is to have a place where those in the PF community can go to find resources as well as share valuable information on living a quality lifestyle with PF – whether you are a patient or a loved one. This is not a medical site. Information shared here comes from years of personal experience as a caregiver and support group leader.
My mother, Beverly Hart, was diagnosed with IPF in November 2003. I was her primary caregiver for 6 years. While diagnosed very late stage and told she had 2 years to live – at best – my incredible mother chose to live life on her terms. She did not let PF define her. She told me shortly after her diagnosis “If I have 2 years to live, I am going to make it the best 2 years of my life.” She truly lived every day by this value.
Mom left this Earthly world on September 27, 2009 but I continue to learn from her teachings. Without sounding like a cliche, she taught our family that “every cloud has a silver lining” and “every cup is half full”. I dedicate this site and my work in the PF community to my mother. She is the one who taught me that anyone can #LIVEwithPF.
I get a sense of trust from this group like no other because they are in the same position as I am in varying degrees of the disease. The end result will be the same for all of us. Family and doctors sometimes are biased because of their feelings and thoughts. – Jane, patient
In my quest for support in dealing with my husband’s pulmonary fibrosis diagnosis, I learned of the Breathe Support groups on Facebook. I am a member of several of them (the PF support group, the PF caregivers group, and the PF Hospice/Palliative care group) and the help I receive from all of them has been exceptional. All the groups are well moderated, information is on target and helpful, and the members are empathetic and so supportive. Thank you Breathe Support Network for all that you do to make these groups happen. – Cheryl, caregiver
The personal care and suggestions give me strength. – Donna, patient
I was desperate to find any support after I got diagnosed with IPF in May 2009. Finding this group saved my mental health. It let me know I wasn’t alone, life can sometimes be unfair and to live my best life. Hats off Breathe Support!!!! – Christine, patient