Health & Wellness

Leslie Steinberg and her mother, Charlotte Griggs

In February of 2007, my mom, Charlotte Griggs had a cough she couldn’t shake, and her doctor sent her for a CT scan. The diagnosis – Idiopathic Pulmonary Fibrosis. Her prognosis was cruel and unfair – three to five very difficult years.

Pulmonary Fibrosis is a deadly disease, robbing its victims of their ability to breathe. My mother, a fifth-generation native of Georgia and longtime active resident of East Cobb, was 60 years old at the time, and wanted nothing more than to see her  grandchildren grow up and enjoy retirement with my dad.

My family and I had never heard of Pulmonary Fibrosis and were terrified to learn more after further research. There is no FDA treatment, no cure, and a three to five year life expectancy. I discovered there were 128,000 living with the disease and 48,000
dying annually. The only hope is a lung transplant (an option for only one percent of patients and with a poor success rate).

I contacted my local members of Congress asking them to support the Pulmonary Fibrosis Research Enhancement Act (PFREA), a bi-partisan bill seeking to establish a national patient registry to help begin to obtain a snapshot of what the disease is, who is affected and what their exposures may be. The Pulmonary Fibrosis Research Enhancement Act, the first-ever introduced in  Congress, will enhance research, prevention, and awareness activities relating to pulmonary fibrosis (PF) at the CDC and NIH by creating a National PF Registry, encouraging the expansion of research efforts at the NIH, developing a National PF Action Plan, and coordinating a National Summit on PF. Finding a common link between patients is crucial. What causes this type of lung scarring? Lung diseases receive virtually no funding from the government when compared to other diseases. It is my personal belief this is due to stereotype that folks with lung disease(s) have been smokers and are somehow responsible for their condition. My mom never smoked a day in her life and was not subjected to second-hand smoke. A registry and awareness are a stepping stone to finding an effective treatment and eventually a cure.

In May of 2011, my mom began a very difficult summer which consisted of constant calls to 911, emergency room visits, and perpetual hospital stays. She coughed constantly and couldn’t climb steps, yet wasn’t considered sick enough to be evaluated for a transplant. Knowing that her time was short, in September, I visited Washington, DC, to join with an advocacy group, the  Coalition for Pulmonary Fibrosis (www.coalitionforpf.org) while my mom was in ICU fighting for her life. Over two days, we visited over 70 congressional offices asking for help. By the time I returned, my mom’s condition had declined again.

While she hadn’t been considered sick enough for a transplant just six months earlier, she was now “too sick” to be a candidate.

My mom lost her battle on September 28, 2011. My sadness is tempered by my resolve to bring awareness to this insidious disease. There are currently 58 co-sponsors in the House and 11 in the Senate (none from Georgia). If you’d like to help me and thousands of families bring awareness to this disease, please go to http://www.coalitionforpf.org/cpf_join.php and become a member of the advocacy team.

(Reprinted from the February 2012 issue of EAST COBBER. Written by Lesley Steinberg. Steinberg is a lifelong resident of East Cobb County. Married to Jon, they have two children: Caroline, 10, and Chip, 4. She serves on the Board of Directors for Friends for the East Cobb Park and is also a member of East Cobb Civitans.)

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