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.
Interaction opportunities will include direct telemedicine, webinars, forums, online meet-ups, local events, and volunteer opportunities. Educational resources will include nutritional advice, screening and treatment options, physician directories, psychological counseling directories, clinical trial information, alternative health care options and family planning information.
Ultimately, this patient, along with her loved ones and medical care givers, will feel empowered. They will be able to make informed decisions. They will read about and interact with other survivors. They will be filled with hope that they can lead active, joyful lives and can in-turn inspire others to do the same.
Our three core strategies are 1) to connect patients and care givers to educational and social resources, 2) to promote requisite research and health care initiatives, and 3) to provide financial assistance for screening, treatment, counseling, and family planning.
1) PATIENT & CARE GIVER RESOURCES
We will develop a portal to connect hereditary colon cancer patients, their loved ones, researchers, and medical care givers. This portal will create opportunities for patients to actively connect with one another. It will also provide access to existing educational and social resources, physical and psychological care from a variety of traditional and modern health care practices.
2) RESEARCH & HEALTH CARE INITIATIVES
We will develop partnerships with medical and research institutions along with other non-profit organizations, in order to promote requisite research on hereditary colon cancers and polyposis conditions; to deliver current information regarding early diagnosis, research, and patient standards of care to medical practitioners; to advocate for growth in the number of patients who have access to specialists and specialized care units; and to increase public awareness of hereditary colon cancers.
3) FINANCIAL SUPPORT
We will support patients and their care givers with access to financial assistance for screening and treatment initiatives, medical bills, medical supplies, medication, supplements, end of life care, hospice, and family planning. We will also work with key organizations to advocate for improved medicare and private insurance coverage and provide patients with self-advocacy information.
Familial Adenomatous Polyposis (F.A.P.)* started in my family with my grandfather who, at age 36, was diagnosed with both F.A.P and terminal colon cancer. He was informed that he had six months to live and that three of his six children likely carried the same disease. His doctor was correct on all accounts. Forty years later, in 2010, my father's quality of life with F.A.P. had deteriorated to an extent that motivated him to end his own life.
My mother knew I had F.A.P. when she first saw blood in my diapers. I was officially diagnosed much later and underwent a total colectomy at the age of 15. In the nearly two decades since, 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 began noticing fresh blood when I used the bathroom. I was subsequently diagnosed with severe iron deficiency and a critically low blood count due to chronic blood loss. As a result, Shawn and I celebrated what I refer to as my "Vampiric Thanksgiving," eating hospital-cafeteria turkey sandwiches while I received two units of blood.
This experience was but a preamble to the assault-and-battery of tests that followed, 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. It was impossible not to give real consideration to whether or not I was developing cancer, or at the least on the precipice of a sharp decline in life quality.
While awaiting diagnosis from several doctors, our home life was consumed by researching possible causes and cures. While the multitude of medical care givers seemed genuinely concerned, we quickly realized that my rare disease provided to be challenging for each of them. Our research lead us to the conclusion, that there was very little credible information available to patients, and to our dismay, no central, robust platform existed to provide educational resources or social support for F.A.P. patients. Then 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. Specialists and specialized care units like the Familial Gastrointestinal Cancer Unit at the University of Illinois at Chicago's Hospital and Health Care Services are rare; there are approximately twelve in the United States.
After six months of physical and mental challenges, ulcers, located at the site where my colon was replaced, were identified as the source of blood. 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. For this alone, I consider myself extremely fortunate when compared with other F.A.P. patients.
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 penultimate goal of the F.A.P. Foundation is to bring together the F.A.P. community holistically by acting as a conduit to physical and psychological care from a variety of traditional and modern health care practices. By drawing upon personal experiences, the support of my distinguished Board of Directors, and research we are conducting within in this small community, I am leading the charge to develop an infrastructure capable of (1) connecting patients and their loved ones to educational and social resources, (2) promoting requisite research and health care initiatives, and (3) providing financial assistance for screening, treatment, counseling, and family planning.
Incorporated July 19th of this year, the vision of the F.A.P. Foundation is to be a beacon of light - extending life expectancy, enhancing life quality, and instilling hope in those born with Familial Adenomatous Polyposis and other hereditary colon cancer diseases.
* Familial Adenomatous Polyposis (F.A.P.) is a hereditary colon cancer disease, effecting approximately 1 in 20,000 Americans, which leads to the growth of innumerable polyps inside the large intestine and rectum. Each polyp has a 100% chance of giving rise to terminal cancer by the age of 40; the only treatment is the total removal of both the large intestine and rectum and a rerouting of the remaining intestinal tract.