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Sunday, January 13, 2013
As a third generation Familial AdenomatousPolyposis (F.A.P.) survivor, all things considered, I have lived a fairly charmed life, at least relative to what most people with this disease experience. That changed last September, just after I married my wife, Shawn.
In early October of last year, I was subsequently diagnosed with severe iron deficiency and a critically low blood count due to chronic blood loss. What followed was an assault-and-battery of tests, all designed to hopefully discern the source of the bleeding. In December alone, I was poked with a needle in excess of twenty times, experienced anaphylactic shock during an iron infusion, swallowed a pill camera to image my small bowel, and was forced to cancel our Mexico honeymoon trip because of a compromised immune system. During this extremely difficult month, my mortality was a common topic of discussion and I envisioned widowing Shawn far sooner than either of us ever anticipated.
In March of 2012, for the first time in the history of my family, I came under the care of an F.A.P. specialist. After six months of physical and mental challenges, ulcers, located at the site where my colon was replaced, were identified as the source of the symptoms. Shawn and I have found, through rigorous trial and error, coupled with exhaustive research into nutrition, that the bleeding ulcers are largely manageable by making nutritional modifications.
While we were relieved that my diagnosis was not terminal, I considered this a ‘near hit’. and reevaluated my particular gifts and aptitudes. Four years after receiving my Ph.D. in Chemistry from Auburn University (War Eagle!!!), I stepped away from my budding career as a Research Chemist at Argonne National Lab to start the F.A.P. Foundation.
The F.A.P. Foundation’s vision is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those diagnosed with Familial Adenomatous Polyposis (F.A.P.) and other hereditary colon cancer diseases.
Today, when a patient is diagnosed with F.A.P., she will likely fall under the care of a gastroenterologist, whom has never treated a patient with this disease. In order to care for her, this doctor will have access to a limited amount of published resources. When the patient turns to the internet to learn what her prognosis means, she will find a few medical explanations, but minimal patient-based information. She will not be able to thoroughly research her surgical options. She will not be able to find dietary recommendations that teach her how to ensure proper nutrition for her surgically altered body. She will not find inspiring words that give her hope for living an active life with this disease.
Someday, when a patient is diagnosed with F.A.P., she will be supported, not only by her family, but also by a network of specialists and fellow survivors. She will have access to an entire community along with resources developed for hereditary colon cancer patients, their loved ones and care-givers. This community will include survivors, hereditary colon cancer specialists, dietitians, surgeons, researchers, therapists, family planners and alternative medical practitioners.
Ultimately, this patient, along with her loved ones and medical care givers, will feel empowered. Together, they will be able to make informed decisions. They will read inspiring stories and interact with other survivors. They will be filled with hope, knowing that they can lead active, joyful lives and can in-turn inspire others to do the same.
We’ll are currently running a fundraiser on StartSomeGood that will run through January 31, 2013. The proceeds will go towards helping us develop a Hereditary Colon Cancer Patient Portal! In phase one, we'll condense currently available, however diffusely scattered, information into a 'one-stop shop' patient resource. Here, patients will be able to learn about:
Financial assistance opportunities
Screening and treatment options
We will also feature 'Stories of Hope' from other survivors in the community and offer the opportunity for survivors to share their own inspirational journey.
The patient portal will be expanded in Phase Two to host:
1) Educational resources including:
Nutritional recommendations necessary to improve eating, sleeping and bathroom experiences
Webinars featuring patients, specialists, medical professionals, genetic counselors, and nutritionists
Information regarding medical and psychological support
2) Social resources including:
A platform for online meet-ups,
Community calendar of events
Our goal is to empower patients with the knowledge they need to confidently face whatever challenges and frustrations come their way.
Then, we’ll get to work on the next major goals of the Foundation which include promoting requisite research and health care initiatives, and providing financial assistance for screening, treatment, counseling, and family planning.
To learn more about our fundraiser and to support our goal, check us out on StartSomeGood (http://bit.ly/12d9mtd)
You can find us on Facebook (www.facebook.com/fapfoundation), Twitter (@FAPFoundation), LinkedIn (F.A.P. Foundation), and YouTube (http://m.youtube.com/watch?v=tRn_EHcvdks). You can also look in on our progress at www.fapfoundation.org. For more information, email us at firstname.lastname@example.org
Survivor, Founder, & President
Care-giver, Co-Founder, & Vice-President