My dad went from playing basketball three times a week at the local YMCA to not being able to climb the stairs to bed. And for two years, the doctors searched for any evidence of why.
He even endured a heart valve replacement hoping that that would cure the breathlessness. It didn’t. It wasn’t for another year that he was diagnosed with idiopathic pulmonary fibrosis (IPF). IPF is a rare lung disease which only affects 40,000 people a year. When my beloved father was diagnosed with IPF, I wanted to support him. But how? This is a rare disease and the prognosis is terminal.
I learned what I could about this heartbreaking condition but the internet is scary and lead to more tears than support.
I did not immediately join a support group for many reasons: it was a two-hour, one-way commute, I was working full time and I was traveling home to help when I could, but the major reason I didn’t attend was because I was afraid of what I would see there. IPF is a progressive disease.
Would I see people in the support group who were much worse off than my Dad? Would that help me or scare me? Would I then really know what was in store for him? Would I see patients who were in better condition than he was and be angry?
Yes, when I eventually got to the support group, all these fears and things were true. But this too was true: attending the support group led to a better understanding of the disease and of my dad. People with IPF have bad days: Dad was not just being stubborn and proud, he was having a bad day. People struggling to breathe sometimes don’t feel like eating, even their favorite meal.
Time has passed and so has my beloved Dad. I created a fund raiser for IPF that raised over $24,000 to benefit the Pulmonary Fibrosis Foundation as well as the Gift of Life, of Michigan, for tissue and organ donation. For some who are healthy enough to undergo a lung transplant, and lucky enough to receive a matching organ in time, and survive this least of all successful transplants, a lung transplant, is one therapy that can treat IPF.
The FDA has approved two drugs in 2015, Ofev and Esbriet that slow down the progression of the disease.Because my Dad loved basketball, the event which raised these funds, involved basketball. Free Throws for Fibrosis, was an event that participants registered for, and gained pledges for, how many free throw baskets, they made out of 100.
This event allowed athletes and non-athletes to participate. In addition, I started a support group in our home town. Although the group fluctuates from 5- 15 people and the topics are not always well defined, everyone gains support from being together. Sometimes, sitting in a room with a rare disease with others who have that same disease is therapeutic in itself. I know my Dad would have benefited from having the “alone” feeling he had, alleviated. Even now, helping others by facilitating this group, has helped me with my own grief.
I am now looking at what my local community needs for those who have a rare disease and looking to help fund some of this need. Many patients go long distances to get treatment, so I see transportation as a need. I see financial support for caregivers who take time off to tend to their loved ones. Perhaps this is where we concentrate future fundraising and awareness goals. But until then, I know I’m making an impact in others’ lives just by opening the door to a support group.
About the Author: Lisa is a Pulmonary Fibrosis advocate and support group facilitator. She has coordinated multiple charity events to raise awareness and research dollars for the Pulmonary Fibrosis community. Her father passed away from the disease in 2013. Lisa has seen firsthand the effects of this rare disease, with no cure on a family and the benefits a support group can have. Read more about her from her alama mater here.
