| Battling IPF for CPF Patients, My Family and Myself By Teresa Geiger CPF Vice President of Patient Outreach and Advocacy |
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In 2000, I met Mark Shreve, now the CEO of the Coalition for Pulmonary Fibrosis (CPF). He mentioned that he was working to start an organization that would help people who had a disease that I had "probably never heard of". Unfortunately, I had. It was IPF. When he learned of my father's death from IPF, he asked me to help with the creation of the CPF and later asked me to join the CPF's board of directors. I was honored. It was fulfilling for me to be involved in an organization that would become a resource for patients and professionals regarding IPF.
Later that same year, my father's brother was diagnosed with IPF. It was the first indication for us that this disease may have a genetic link for some patients - including those in my family. My uncle died early in 2001 before the CPF celebrated its first anniversary.
My family, realizing that this disease was likely to rear its ugly head again, chose to become involved in the familial study on IPF being done at Duke University. Through the study's screening process, it was determined that my father's sister also had IPF, though she had not begun to show any symptoms. Two cousins were also suspect.
In 2003, as the CPF planned its first "National IPF Awareness Week" and our first meetings with more than 30 members of the House and Senate, my aunt died as a result of complications after knee surgery, related to her IPF. The scene of her lying in her hospital bed before she died played out in my head as I met with members on Capitol Hill just weeks later. It served to drive me ever more to further the cause and plead for research funding and education for a disease that was taking my family away from me. My Aunt Lucy had planned to help with IPF advocacy efforts upon her recovery.
Later in 2003, I learned my father's youngest brother was diagnosed with IPF. I was stunned. Even of the family cases I had heard of IPF, I had never heard of the disease taking four out of five siblings from the same family. When my uncle died in the summer of 2005, my passion for the CPF and my drive to help get the message out about IPF grew even stronger.
When my father's only living sibling, his brother Maurice, was diagnosed with IPF just months ago, making the toll of lives ruined by IPF in my father's family to five out of five, my mission became unquestionable.
IPF has called me to action and the CPF has given me the opportunity to help its members while also helping my own family. I am thankful. I know that there are hundreds, if not thousands, of families like mine who are in need of educational resources and support networks to help them cope with IPF. Through my position as the Vice President of Patient Outreach and Education, I plan to help meet the educational needs of physicians and patients while supporting efforts for finding life-saving treatments and a cure.
The Coalition for Pulmonary Fibrosis, a non-profit organization, seeks to help the people afflicted and the people who care for them. Its web site: www.CoalitionForPF.org, provides up-to-date information on the latest studies and clinical trials being performed as well as provides a wide range of resources for families and medical professionals alike.
Teresa Geiger
CPF Vice President of Patient Outreach & Education
