What is Scleroderma?The National Institute of Arthritis and Musculoskeletal and Skin Disease discusses this rare condition on its Scleroderma page. It describes the disorder as an autoimmune connective tissue and rheumatic disease. It usually begins with a faulty immune response that tricks the body into producing excessive collagen. Your skin, joints, and organs react to the collagen by forming dense, hard patches, similar to scarring. As connective tissue also supports and protects your body and its systems, collagen build-up causes significant physical issues. Physicians also consider scleroderma a rheumatic disease that causes pain in muscles, joints, and fibrous tissue.
Two Types of SclerodermaWhen your immune system attacks your body, it can cause one of two types of scleroderma.
Localized SclerodermaThe most common type of scleroderma affects only the skin and its underlying structure. When localized scleroderma appears on your skin, it usually forms a pattern.
- Morphea: A pattern on the skin that's waxy or in streaks and is a half-inch in diameter or greater
- Linear: A thickened line of tissue along the length of an arm, leg, or forehead
Systemic Scleroderma/Systemic SclerosisDoctors also refer to systemic scleroderma as systemic sclerosis. It's more serious than localized scleroderma as it often affects many bodily systems. Systemic scleroderma can damage a person's blood vessels, heart, lungs, kidneys, and other internal organs. The Cleveland Clinic Scleroderma page discusses two different categories of systemic scleroderma.
- Limited cutaneous: gradually affects the skin on a person's fingers, hands, face, lower arms, lower leg, feet, and also the esophagus
- Diffuse cutaneous: Progresses rapidly, beginning with fingers and toes, and sometimes extends to upper arms, trunk, and thighs, digestive and respiratory systems, and kidneys
Scleroderma SymptomsScleroderma patients exhibit a long list of symptoms. These vary depending on the disease severity. Some of the symptoms include:
- Swollen hands and feet
- Excessive calcium deposits
- Red spots on the skin
- Rigid joints (contractures)
- Tight skin
- Joint pain and stiffness
- Swallowing difficulties
- Hair loss
- Raynaud's syndrome: fingertips and toes experience coldness, discoloration, and paresthesia
- Sjögren's syndrome: saliva and tear glands don't produce enough moisture
Treatment for SclerodermaMedical professionals have found no cure for this disease. A treatment regimen focuses on several goals.
- Early diagnosis
- Symptom relief: medications to soothe skin, promote blood flow, relieve digestive stress, treat lung issues and kidney disease, etc.
- Halting the disease's progression: exercise, joint protection, skin protection, proper diet, stress management, dental care
- Continuous monitoring
What Causes Scleroderma?Medical professionals and researchers don't know what causes scleroderma. They recognize that certain factors play a role in triggering the disease.
- Genetics: You can't inherit scleroderma from a parent or have an increased risk if a close family member has scleroderma.
- Unusual Immune/Inflammation Response: You have an increased risk if you have a history of unusual immune or inflammatory actions.
- Hormones: Women develop the disease more often than men.
- Environmental Factors: Chemical contamination is a factor that can affect the development of scleroderma.
Environmental Factors and Scleroderma From Water Contamination at Camp LejeuneCamp Lejeune is a base on a 156,000-acre military reservation in North Carolina. The base accommodates USMC training and readiness operations, many of which rely on various fuels and chemicals. A nearby dry cleaning operation also used chemicals in its processes. During their operations, the military and the dry cleaner contaminated the base by releasing chemicals into the environment. Chemicals and volatile organic compounds (VOCs) contaminated the soil, sediment, surface water, and groundwater. Since the base began operations, Marines and their families have lived in base residential housing. Workers and contractors have entered each day to perform their jobs. These people inhaled chemicals in the air and consumed them in the water. If they ate plants grown in the soil, chemicals contaminated their food. They may have also encountered contaminants through other exposures.
Decades of Chemical ExposuresThe United States Marine Corps established its Camp Lejeune base in the 1940s. Researchers speculate that significant contamination exposures began during the base's early days and continued through 1987. Contaminants came from multiple sources, including:
- Underground storage tanks
- Off-base dry cleaning plant
- Drums, storage tanks, batteries, and other improperly disposed-of items
- Waste Petroleum Oil, Lubricants (POL), Battery Acid
- Lead (Pb)
- Pesticides and PCB oils, DDD, DDE, and DDT
- Benzene, Ethylbenzene, Toluene
- Trichlorofluoromethane (CCL3F)
- Mercury (HG)
Camp Lejeune is an EPA Superfund SiteIn the late 1980s, the Environmental Protection Agency completed its site investigation and assessment. They documented contaminated soil, sediment, surface water, groundwater, and drinking water. In 1989 they listed the base as a Superfund Site under the Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA.) The EPA also received approval to place the site on the National Priorities List (NPL) For Uncontrolled Hazardous Waste Sites. Superfund and NPL designations prioritize remediation operations for the worst waste sites in America. The EPA eventually oversaw remediation actions for 26 “operable units” on the base. Camp Lejeune remains a Superfund site, requiring reassessment of its contamination every five years.
Focusing on TCE and PCEOver the past three decades, researchers at Camp Lejeune gradually focused on the contaminants trichloroethylene (TCE), tetrachloroethylene (PCE), and, in some cases, benzene. Reports explain that these chemicals came from dry cleaning, degreasing, and other on and off-base operations. The most recent studies don't address many of the other detected contaminants individually. Reports seemingly ignore multiple pollutants or lump them into the volatile organic compound category. The Agency for Toxic Studies and Disease Registry studied reported diseases and contaminants found at Camp Lejeune. They found strong evidence that TCE could cause scleroderma. They found limited evidence of a PCE or benzene connection to the condition.
Up to One Million People Exposed to Contaminants at Camp LejeuneEpidemiologists, chemical experts, medical specialists, and other scientists have studied contaminant properties and related diseases for years. They conducted multiple studies comparing military personnel at Camp Pendleton, workers in other industries, and prior animal studies, which confirmed a definitive connection between TCE and Scleroderma. They have established causal links between TCE, PCE, and multiple diseases and conditions. They have also determined that water was the primary contamination source at Camp Lejeune. Researchers estimate that up to one million people relied on the camp's water supply for bathing, drinking, or other personal and household tasks. The military never informed these captive consumers about their daily toxic exposures. They affected everyone on the base, including children during their developmental years, pregnant women, and babies in utero.
Delayed Cleanup Allowed Continued ContaminationUnfortunately, the USMC didn't clean up the contamination immediately when detected. A January 1985 engineering study collected samples at multiple potentially contaminated sites. They tested and documented chemicals found in these areas, yet their report recommended only “future monitoring.” Base administration did not notify exposed people while they were living on the base or after they moved to other locations. Because of their limited efforts to publicize the potential for harm, many people still don't recognize the connection between their latent medical conditions and their past water consumption.
Camp LeJeune Drinking Water Fact-Finding PanelDespite the marines' ongoing failures, a 2004 fact-finding report to the Commandant of the Marine Corps found few issues. The report blamed confounding factors for the base's inaction.
- They accepted that no existing regulatory standards required action.
- They had no record of complaints from residents.
- Camp Lejeune's Environmental Division dealt with Inadequate funding and staffing.
- They followed a compliance-based approach to regulations (compliance with existing regulations.)
- A technical advisory organization wasn't aggressive “...in providing Camp Lejeune's Environmental Division with technical expertise….”
- They didn't understand the significance of VOC water contamination.
Activism-Inspired ActionAs marines and their families became aware of Camp Lejeune contamination, they expected action and assistance. Some affected became activists when the marines didn't respond with compensation or extend medical benefits to family members. Former Master Sergeant Jerry Ensminger formed a Community Assistance Panel and organized former marines for action. He created a website, The Few, The Proud, The Forgotten, where he posted Camp Lejeune contamination information and reports. He testified before Congress about contamination and shared his experience dealing with his daughter's death due to leukemia due to exposure. The Justice for Lejeune website showcases the efforts of multiple veteran service organizations. The site posts links to contamination information, victims' stories, and copies of letters to political leaders. The Baby Heaven page describes the nearby Jacksonville, NC graveyard as one of the saddest places in America. It shows photos of babies' graves, including some who died within days of birth.
Camp Lejeune LitigationIn 2009, some contamination victims began filing lawsuits. A federal judge eventually consolidated them into a single multidistrict action. The court later dismissed the suit based on North Carolina's 10-year Statute of Repose. Too much time had passed since their contamination exposures and injury manifestations preventing them from utilizing the court system.
Congressional ActionEventually, Camp Lejeune victims and activists convinced Congress to take action on behalf of those injured due to contamination.
Honoring America's Veterans and Caring for Camp Lejeune Families Act of 2012: Public Law 154
- Public Law 154 includes provisions from H.R. 1742, the Janey Ensminger Act of 2012. The law authorizes veterans' benefits based on residency at Camp Lejeune for a minimum of 30 days from January 1, 1957, to December 31, 1987.
- Scleroderma became one of 15 presumptive conditions eligible for Veterans Administration benefits. When a person proves that they lived on the base during the specified period, they don't have to prove injury causation.
- Benefits include waived copays, some nursing home costs, transportation costs, and teleconsultation benefits. The law also eliminates on-base service dog bans.
H.R.3967 - Honoring our PACT Act of 2022President Biden signed the Honoring our PACT bill into law on August 10, 2022. It contains provisions from the Camp Lejeune Justice Act of 2022. The new law provides several benefits for Camp Lejeune victims. The biggest gain is that it waives any statute of limitations and sovereign immunity defenses. Contamination victims may now move forward by filing or refiling previously dismissed lawsuits. The law also:
- Sets the United States District Court for the Eastern District of North Carolina as the exclusive jurisdiction for Camp Lejeune cases
- Prevents punitive damage claims (damages to punish the government for wrongdoing)
- Lets Veterans Administration, Medicare, and Medicaid deduct prior benefits paid for contamination-related injuries.