Retired Marine Fights for Our Lives

My name is Jay P.. I am 32 years old, recently retired from the U.S. Marines after 14 years of faithful service. I am hiking the Appalachian Trail from Mt. Katahdin, Maine, to Springer Mountain, Georgia -- 2,160 miles of wilderness trails.

I have a condition called Von Hippel-Lindau, or VHL. The disease affects various organs. I have had my left eye and left testicle removed as a result. I also had brain surgery in July 1997, in which three tumors were removed. Next, I had a partial nephrectomy performed on my left kidney in August. I currently have more tumors on both kidneys, a tumor on my cerebellum, multiple cysts in my pancreas, and several cysts in my spinal cord, all of which will probably have to be removed eventually. With this prognosis, it was decided by a Medical Board that my career as a Marine was to be ended.

I understand and respect that decision. A Marine must be able to be deployed anywhere in the world at a moment's notice, and with my current health status I no longer meet that requirement. The Physical Evaluation Board, or PEB, that makes the decisions concerning discharge for medical purposes found me "Unfit For Duty" and instructed that I be discharged without any benefits other than a small amount of severance pay. This would have meant that I would not receive any medical care, disability payments, etc. Under the current guidelines set down by the Department of Defense, the PEB decided that my having VHL was not caused or aggravated by my military service.

VHL is considered to be a "genetic" disease, as are many others, including diabetes, heart disease, breast cancer, colon cancer, etc. This simply means that one has a predisposition toward a particular disease. Certain diseases, and I would learn that VHL is one of them, are for some reason placed in a category that is considered to be "Not the fault of the service." According to the DOD policy, these certain disorders constitute a pre-existing condition. Technically, it is termed "Existed Prior To Entry," or EPTE. This is the case regardless of whether the military member had any idea that they carried this faulty gene or not upon entry into the military.

I happen to fall into that situation. No one else in my family has ever been diagnosed with this disease and I showed no symptoms of it until I had been in the Marine Corps for about three years. Upon my diagnosis in 1987 (when I became suddenly blind in my left eye*) I was allowed to continue to serve because I was able to perform all the duties of a Marine. After serving my country for my entire adult life, I was shocked when I received the PEB's decision.

Fortunately, there is an appeals process. I was able to find evidence that supported my claim, that at a minimum, my service in the Marine Corps aggravated my condition and could have even caused it to appear in certain organs. I was able to show evidence that VHL is a "two hit model disease." Someone with VHL is born with one "hit," one change in the genetic code. However, this is not enough to initiate the disease process. For tumors to form, a second "hit" must occur. This second "hit" is possibly caused by something in the environment. Researchers still don't know for certain. Therefore, it was my contention that, since I had no symptoms of VHL upon my enlistment, I must have been exposed to something during my military service that caused the second "hit." The Board that I appealed to found in my favor. I was obviously thrilled at the appeal board’s decision.

When decisions arise around employment and medical coverage, it takes time and resources to appeal such a decision. I was fortunate that upon reconsideration, the Marines granted me full retirement with medical benefits. While that is an important victory in the U.S. health care system -- keeping my health care coverage -- it will seem difficult for people in other countries to understand. And in the grander scheme of things, it is only one small skirmish. The real battles are in wrestling one by one with the tumors themselves, and dealing with each one as constructively as possible, without losing our health. What we really need are better weapons in the war on VHL.

Through these last several years -- as I have come to learn this diagnosis, and begun to understand how to manage my own health -- the VHL Family Alliance has been a true source of support for me. This community of survivors has helped to support my spirit through the medical battles and the challenges I encountered with the terms of my retirement and health care coverage.

I would like to give back something in return. After much thought and research, I decided on a project that could be of benefit to all of us in our VHL "Family." I have set a goal to walk the entire length of the Appalachian Trail. The walk began the first of August at Mt. Katahdin, Maine, and will end 2160 miles away at Springer Mountain in Georgia. Why? Because it challenges your mental and physical toughness. Not only Marines, but persons with VHL and their families must have perseverance and courage. We are challenged to manage this disease, until all of us working together find the cure for VHL and cancer.

My goal is to raise $100,000 for the VHL Family Alliance during this walk through fourteen states. I want to raise that money to help find a cure for VHL -- to help people get an earlier diagnosis and to provide better ways of controlling tumors until one day we can stop the tumors from coming at all. I believe that people will be generous when they understand the way this disease hits families like theirs. If it means walking this trail when I’m tired, I will do it to help those who have supported me.

I'll need your help to do this! Why not join my team and help me reach this target, please send your donation to the North Carolina Chapter of the VHL Family Alliance at:

VHLFA-NC

102C Commonwealth Ct.

Cary, NC, 27511

In this first month, I have already hiked 300 miles -- to the top of Mt. Katahdin with a 60-pound pack, through woods and swamps, in dry weather and wet. I’m hiking an average of 15 miles a day, with a one or two day rest after 5 days of hiking.

I'll do my part -- you do yours. With your help we can cure VHL!

* Editor's Note-- VHL causes angiomas of the retina. It does not usually cause sudden blindness but in Jay's case the angiomas went undiagnosed until they were quite large and had caused a retinal detachment.

A native of Valdosta Georgia, currently residing in Camp LeJune, North Carolina, Platt joined the Marine Corps in 1984 and served in various roles, including ammunitions and explosive technician when the 1987 diagnosis exploded much of his world. Over the years, the genetic disease has required surgeries to remove tumors on his brain and in several organs. In the next year he is facing surgeries to remove tumors in his spine and on both kidneys.

The Appalachian Trail Conference estimates that only about 300 people in 70 years have completed a thru-hike southbound. Different segments of the trail offer a variety of scenic terrain and views as they connect with mountains, lakes, ponds, streams and forests. Extremely rugged in many sections, the wooded, unlit trail offers small lean-to’s for night shelter. Established in the 1920’s and 30’s by hikers, it was made part of the National Trail System by Congress in 1968. The trail is maintained by volunteers.