Local chapter hopes first walk morphs into annual event
■ By Melissa Diaz Hernandez / Editor
The local chapter of the Pulmonary Fibrosis Foundation (PFF) held its inaugural walk Sept. 9 at Hemet’s Mary Henley Park. The walk attracted those with pulmonary fibrosis, their family members and support teams. Rebecca Johnson, founder of the local chapter, hopes this becomes an annual walk to raise awareness and increase support for those with the disease.
Johnson, who was diagnosed with pulmonary fibrosis in June 2012, said that Saturday’s fundraiser was the first one she has organized.
“I would like to make it an annual event as long as I am around,” she added.
Pulmonary fibrosis is a condition that causes the lungs to become thickened, stiff and scarred, according to the PFF. Because of this, it becomes increasingly difficult for the lungs to transfer oxygen to the bloodstream. There is no cure – just two pills that can prolong one’s life.
The Valley Chronicle asked Johnson about her daily routine.
“It all depends how I feel,” she explained. “I don’t get up early. I used to be an early riser but since I have this illness, I no longer am. If I have a doctor appointment, then I will get up early. I try to stay busy – I don’t feel as if I should just lie down and feel sorry for myself. “
Johnson sells Avon to keep active and in contact with others, saying that if she did not keep busy, then her condition would probably worsen rapidly.
She feels fortunate to receive support from her daughter. “Every other Monday, my daughter and I deliver Avon books to my customers,” said Johnson. “I drive and she delivers the books to their doors. I am very fortunate to have a great daughter living with me at this time because she helps me a lot.”
Lack of energy is an issue and Johnson finds herself taking frequent naps when she does not feel well. Other symptoms, according to the PFF, include chronic, dry hacking cough, chest discomfort, loss of appetite and unexplained weight loss. The foundation also states that symptoms may surface after the disease has progressed, not necessarily during its onset.
What was the diagnosis like for Johnson? “I was devastated when the doctor told me that I have pulmonary fibrosis and that I only had two to five years to live,” she said. “Boy, that really scared me. Especially when they said there is no cure and no medications to help it in anyway except for a pill that will prolong your life.”
The PFF discusses a recent study where the majority of patients with idiopathic pulmonary fibrosis (when there is no known cause) may have been initially misdiagnosed.
“I thought there must be others like me that I can talk to, but I didn’t know how to contact anyone,” said Johnson.
There were no local support groups, so Johnson decided to start her own. “All of a sudden it dawned on me, I am somebody, so I started one. I really didn’t know how to do any of this but I contacted the PFF and they helped me get it off the ground. Finally, I had others I could talk to and share what I was going through because they are going through the same thing.”
“I just wish that I could make more people aware of this awful disease and come to the meetings. It would really help them to handle their everyday life. I am also hoping that when I am no longer here, that there will be someone to take my place and keep the support group going.”
To contact the local chapter, call Rebecca Johnson at 951-926-7800.