Statement of Testimony to the Committee on Veterans' Affairs
Oversight Hearing on Research and Treatment of Persian Gulf War Illness
Veterans of Modern Warfare, Inc.
25 September 2007
My name is Juliana M Mock, President, Veterans of Modern Warfare, Inc. #33107 P.O. Box 96503 Washington, DC 20090-6503. It is an honor to come before you today and share with you my life as a Persian Gulf War veteran.
I served in the Persian Gulf War with the US Army. I deployed with the 87th Medical Detachment (Dental Services) from Germany and served in-theater with the 12th EVAC Hospital.
Our group of 62 was dispatched into Northern Saudi Arabia in mid-December 1990 into an empty grid area that was marked by a dead camel. It is at this location that we spent our Christmas holiday wringing laundry with blistered hands just before the onset of a large sandstorm. It is also at this location that I would hear the first of a succession of chemical alarms.
At the end of December, my 12-person dental team was assigned to the 12th EVAC Hospital along Tapline Road. Located roughly 30 kilometers from both the boarders of Iraq and Kuwait, we were the first forward hospital open for patients. We also provided dental support for the Iraqi EPW's at the 301st Military Police Camp.
During the months of January, February and March 1991, we repeatedly experienced the loud alarms of chemical detectors. We ingested expired pyrostigmine bromide tablets; we wore gas masks with expired filters, inhaled dust and sand in the air that was thick with the black of burning oil. I experienced respiratory difficulties, my skin grew hot with red rashes and I began to suffer from debilitating headaches. Many of my contemporaries experienced many of the same, or a combination of these symptoms.
For a time, my husband, also a Persian Gulf War veteran, and myself were very ready to put the history of our experiences and exposures in the Gulf far behind us and move forward with our lives and begin a family.
It was after our children were born in 1995 and in 1997 that we could no longer deny the possible significance of the pre-deployment vaccines we took before deployment to Saudi Arabia or the possible chemical and environmental exposures. Nor could we ignore the significant neurological challenges of our beautiful son. As our eldest son's first year passed and his second birthday approached, it was very clear that Stephen could not speak and that he did not experience sensory events in a typical manner. Our hearts broke with each new diagnosis. He was severely dyspraxic. Not only would our son require aggressive speech therapy, but he was also diagnosed with a dangerous connective-tissue disease which causes severe bruising that must constantly be monitored. He was diagnosed with an additional skin disorder, sensory-integration disorder, hypotonia, sleep apnea and learning disabilities and eventually with bipolar disorder and Tourette's Syndrome. Stephen, now 12, has spent seven weeks of his young life hospitalized in efforts to regulate his very irregular brain.
After a second difficult pregnancy requiring multiple hospitalizations to stop preterm labor, we brought our youngest son home weighing just over four pounds. Although he was not nearly as challenged as his brother, he has struggled with auditory processing, sensory integration disorder, hypotonia and severe sleep apnea.
Tragically, as the needs of my children grew, my own symptoms significantly increased. I dismissed the continued physical symptoms until they finally began to affect my daily life and the lives and function of my family: hot red rashes, daily roving hives, night sweats, fevers, tremors, joint and muscle pain, loss of muscle function, hair loss, fatigue, joint nodules, paresthesia and memory loss.
In 2003, I was referred to a neurologist. The lesion on my brain and the lesions in my spine were found with MRI's and they provided us with proof of my debilitating health and a diagnosis of Multiple Sclerosis.
I could no longer take my children for walks, cook meals or clean the house. The burden of our family's situation at this time seemed hopeless and the stress and grief over our situation was unbearable. We were forced to move from our two-story home into a one-story rambler. I began relying on my cane more frequently and began wearing a stabilizing leg brace. My excruciating headaches necessitated trips to the emergency room.
All of my efforts and energy were focused on my children. Their developmental and physical needs were significant and their demands overwhelming. Each child had weekly individual speech therapy and occupational therapy appointments. Although we have private health insurance, these rehabilitative therapies are not paid by insurance companies once a child reaches the age of 7 years. We soon found ourselves with medical expenses totaling nearly 15% of our annual income - after insurance payments.
Our eldest son has seen his specialists on a regular basis: neurologist, hematologist, rheumatologist, psychiatrist, geneticist, neuropsychologist. We were thankful to find a private school prepared to help our son learn as only he can - never mind that I must travel 72 miles daily to get him to school and home again. And at 12, he is thankful to receive speech therapy at 8:00 a.m. on Mondays before we travel to his school. On Tuesdays he receives occupational therapy and he is learning assistive technology computer programs that will allow him to more successfully complete his school work and express his thoughts and ideas. And on Wednesday mornings, both of the boys receive sensory integration therapy before their school days begin. Stephen must be taught what most of us take for granted: forming sentences, self-expression, being able to realize his own hunger or tie his shoes when his fingers feel "tingly". His anguish is devastating and it breaks my heart.
Some days I have help driving the boys to their schools. On the days I do not have help I return home and rest until I need to leave for the return trip to fetch them from school. Keeping our household clean is a challenge and we often must hire help.
I have benefited from Solu-Medrol steroid infusions. Lesion activity has slowed and my many other symptoms have become more manageable. But I am far from a typical, healthy 40 year old woman. My headaches have forced me to the hospital 3 times this year alone and any time after 7:30 p.m. I can be found with an approximately 60% deficit on the right side of my body. I have little skin bumps that grow and subside, depending on the severity of my neurological symptoms. On particularly bad days, my boys try to support me as I walk.
It is clear to my husband and myself that the exposures and vaccines that we received more likely than not have played a large piece in the decline of my own health. We have worked very hard to provide our sons with the best medical care available. More than one of their providers has taken an interest in our situation, our exposures and the neurological health of our children. More than one provider has stated that they believe it is plausible for our circumstances to have played a role in their deficits. And more than one provider has shown a strong interest in conducting a study focused on the neurological and physical health of Persian Gulf War veteran children.
We know persons who deployed with us in-theater who have not been healthy since their deployment and we know that there are many who have deteriorated slowly over the years and who are now in crisis. Most of the parents registered in my gulfwarveteranswithchildren yahoo! web group have stated that their children suffer from many of the same neurological challenges as our children. At one time, the group represented nearly 100 children. Parents reported a pattern of common denominators: severe speech impairments, fine and gross motor deficits requiring significant developmental intervention, learning disabilities, and blood and connective tissue disorders. Less common, although present, were the families reporting hydrocephalus and kidney disorders.
My children have the benefit of a unique bond resulting from their shared struggles. While they share their developmental struggles, they encourage and help each other to a depth that is far beyond their years. Our lives differ greatly from those of our contemporaries. Before travel, we must arrange and prepare all their medications. We must make certain that hotel rooms will accommodate their Bi-PAPS the machines that provide them nightly continued airway pressure preventing airway collapse.
My husband has thankfully remained healthy and he continues to serve in the US Army Reserves. We have often spoken of our concern for the service members who have taken pre-deployment vaccines and who are exposed daily to presumed and unknown environmental contaminants.
We believe that it is vital to the health of our most recent veterans that you continue to study the long-term health of Persian Gulf War veterans and our children. Please, learn from what has happened to me, my family and the lives of at least 300,000 other Persian Gulf War veterans.
The Department of Defense acknowledged our exposures in letters sent in both 1997 and 2001. There must be accountability for the health care of our ill veterans. A comprehensive VA registry must be funded to track Gulf War veterans and their children. This renewed family registry must be in place to record the progression of Gulf War veterans as well as the physical and neurological defects of our children.
The Veterans Administration must also create an MS Registry for Persian Gulf War veterans. We believe that many of our amalgamated symptoms are developing into diagnosable illnesses and diseases, such as brain cancer, ALS and Multiple Sclerosis. We believe that a great many of our veterans who have received MRI diagnostic readings have been found to have brain and/or spinal lesions. These findings must be investigated to determine if our veterans are presenting with a typical or an a-typical form of Multiple Sclerosis.
Dedicated funding must be established to create a systematic and more standardized approach to diagnosing and treating the unique illnesses of our veterans.
As a cohort, we are becoming increasingly debilitated. Please help us and help our families.
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