Porphyria cutanea tarda (PCT) is a blood condition that causes painful skin lesions and affects many veterans that have been exposed to Agent Orange.
PCT itself is a rare condition amongst the general population, but it is common enough among Vietnam veterans that it is on the Agent Orange presumptives list.
The VA recognizes how much of an impact PCT can have on a veteran’s life. If you have this condition or you are the surviving spouse of a veteran who had this condition, you are entitled to VA disability compensation.
In This Article on PCT VA Disability:
- Porphyria Cutanea Tarda (PCT): What You Need to Know
- Symptoms of PCT
- Diseases Linked to PCT
- How PCT Affects the Liver
- The Link Between Porphyria Cutanea Tarda and Alcohol Abuse
- The Importance of a Porphyria Cutanea Tarda Urine Test
- Do You Have PCT or Pseudoporphyria Cutanea Tarda?
- Other Skin Problems Associated with Agent Orange
- Porphyria Cutanea Tarda: Veterans’ Disability Benefits
- VA Disability Ratings for Porphyria Cutanea Tarda
- Disability Benefits for Surviving Spouses and Dependent Children
- Woods and Woods – Helping Veterans and Their Surviving Family Members
Porphyria Cutanea Tarda (PCT): What You Need to Know
People with porphyria cutanea tarda lack an enzyme needed to make heme, a molecule that binds oxygen in the blood and helps carry the oxygen throughout the body. Heme is also used to make various proteins.
Heme is most commonly found in bone marrow, the liver, and red blood cells. It is a molecule that is vital to keeping your organs and systems operating properly.
To formulate heme, the body uses enzymes to convert various compounds into porphyrin. Once this process is complete, other enzymes convert the porphyrin into the heme. If the body lacks the enzymes needed to perform this final conversion, porphyrins start building up in the body, leading to pain, skin fragility, and photosensitivity.
If you have been diagnosed with PCT, you are deficient in an enzyme called uroporphyrinogen decarboxylase (UROD). Sometimes, though, the cause can be associated with high levels of iron in the blood, also known as iron overload disorder.
While PCT can be an inherited condition, a 2016 review of material on PCT by the National Organization for Rare Disorders found that between 75% and 85% of people who have this condition acquire it. In the case of veterans, they acquire it through Agent Orange exposure.
One of our VA disability lawyers goes over the Agent Orange Presumptive Conditions list in this video:
Symptoms of PCT
Porphyria cutanea tarda causes photosensitivity (sensitivity to sunlight). Skin that is exposed to the sun – particularly the face and hands – can develop painful blisters. Overall, the skin becomes more fragile and sensitive. When you experience any sort of trauma (even minor trauma), your body can react by blistering and peeling.
Over time, the blisters can cause scarring, which can lead to hyper- or hypopigmentation of the skin (lightening or darkening where the skin has sustained damage).
Some other symptoms of PCT that you might notice include milia (small bumps that look like whiteheads) that develop on the back of the hands. Another symptom is pseudosclerosis (hardened, waxy patches of skin).
Diseases Linked to PCT
You might think that PCT is not a serious condition. It is painful, but not something that can lead to death unless it is left untreated and can contribute to serious liver damage or cancer.
However, the Journal of the American Academy of Dermatology found that patients with this disease have an increased rate of mortality from:
- Cancers of the lungs, gut, gallbladder, and liver
- Gastrointestinal diseases
Therefore, it is not unfounded to think that PCT was a contributing factor if a veteran is severely ill with or has died from these types of diseases.
How PCT Affects the Liver
PCT does not just impact the skin, though. It can also adversely affect the liver. Normally, the liver removes any toxic substances from the blood, including excess porphyrins, and secretes them via the bile. With a high number of porphyrins building up in your system, the liver cannot keep up, and eventually, you can develop liver damage, including:
- Hepatic siderosis (high iron levels in the liver)
- Steatosis (high levels of fat in the liver)
Excess porphyrins can lead to liver inflammation and scar the portal vein in the liver. Left untreated, you can develop cirrhosis (extreme liver scarring) and even liver cancer.
The Link Between Porphyria Cutanea Tarda and Alcohol Abuse
Excessive consumption of alcohol can result in PCT skin symptoms (a condition called sporadic porphyria cutanea tarda) and liver damage. Both porphyria cutanea tarda and alcohol abuse lead to liver scarring, which can cause or exacerbate the existing liver disease.
The Importance of a Porphyria Cutanea Tarda Urine Test
A doctor will recommend a porphyria cutanea tarda urine test which looks for elevated acid levels and can differentiate between PCT and acute porphyria.
In addition to a urine test, your doctor will likely order a blood test to evaluate for elevated levels of porphyrins in the plasma, as well as high blood glucose levels. A stool sample or skin biopsy might be necessary to rule out other conditions.
Treatment for PCT
Your doctor will likely start you off with conservative treatment measures, like topical therapies. However, if these measures fail, your doctor may recommend chloroquine therapy or phlebotomy treatments (blood removal to reduce the amount of iron or porphyrins in the body).
Once you have PCT, your doctor will periodically order blood work to evaluate your porphyrin levels. If levels start to rise, they can catch the issue early and treat it before you start experiencing painful skin symptoms again or develop liver damage.
Here are some tips on your C&P exam from one of our VA disability lawyers.
Do You Have PCT or Pseudoporphyria Cutanea Tarda?
It is important to have your doctor run diagnostic tests to get a definitive diagnosis to receive a disability rating and benefits. Without that information, you cannot link your active duty service and Agent Orange exposure to your skin condition.
- Some antibiotics
- Estrogen-based drugs
- Naproxen or other non-steroidal anti-inflammatory drugs (NSAIDs)
Kidney dialysis can also contribute to pseudoporphyria cutanea tarda, as can ultraviolet light treatments, excessive exposure to the sun, and too much time in a sunbed.
Other Skin Problems Associated with Agent Orange
Currently, there are two skin conditions on the Agent Orange presumptives list: porphyria cutanea tarda and chloracne.
Chloracne is also a rare skin condition. Instead of causing blisters like PCT, it causes blackheads and cysts. It is easy to mistake it for acne. Unlike acne, though, chloracne is not caused by overactive oil glands and the accumulation of dirt, skin cells, and sweat in the pores. Instead, it is caused by the concentration of toxic chemicals in the glands from Agent Orange exposure. Over time, the toxins break down and turn skin glands into cysts.
In severe cases, chloracne can cause painful, open sores. Once healed, permanent scars develop.
To review, common skin symptoms of Agent Orange to watch out for include:
- Acne-like cysts
- Fragile skin
- Peeling skin
- Pain or sensitivity to sunlight
Porphyria Cutanea Tarda: Veterans’ Disability Benefits
In 1994, The Health and Medicine Division of the National Academy of Sciences, Engineering, and Medicine determined that there was enough evidence that exposure to Agent Orange was a contributing factor in developing this condition. Therefore, since then, the VA has added porphyria cutanea tarda to veterans’ disability benefits.
Porphyria Cutanea Tarda VA Benefits Eligibility
According to VA disability rating regulations, you must be at least 10% disabled within a year of exposure to Agent Orange.
Even if you were not serving in Vietnam, veterans can be eligible for benefits. Acceptable service areas include:
- Exposure to Agent Orange residue on C-123 planes flown during or after the Vietnam War
- US military bases in Thailand or the Royal Thai Air Force base (between 1962 and 1975)
- The Korean demilitarized zone (between 1967 and 1971)
- Herbicide testing and storage facilities outside of Vietnam (including the US and other countries)
If you were in any of these areas and experienced PCT symptoms, you are eligible for a free Agent Orange registry health examination.
Here one of our VA disability lawyers talks about how SMC (Special Monthly Compensation) works to help you get more money for extra expenses related to your disabling condition every month.
VA Disability Ratings for Porphyria Cutanea Tarda
During that examination, your doctor may determine that your VA rating is 10%, 30%, or 60% based on PCT symptoms alone. If you have other health conditions on the Agent Orange presumptives list, your overall rating can increase up to 100% depending on your illness and symptoms.
In addition to reviewing your skin and evaluating how many lesions you have (20%-40% puts you in the 30% VA rating category, while over 40% puts you in the 60% category range), your doctor will consider the therapies required to help you recover from your illness or suppress the symptoms.
Following is a breakdown of how the VA rates conditions of the skin:
- 0% Rating: PCT lesions impact less than 5% of your body or parts of your body that are exposed (like the face and hands) and the only treatment you require to ease your symptoms are topical therapies within a 12-month period.
- 10% Rating: At least 5% (and no more than 20%) of your body is covered in lesions (or the same percentage of exposed areas). Intermittent systemic therapy was required to ease symptoms for less than a total of six weeks in a 12-month period. Therapies include phototherapy, photochemotherapy, corticosteroids, retinoids, PUVA (ultraviolet radiation treatment), immunosuppressive drugs, and biologics.
- 30% Rating: Lesions impact 20%-40% of your entire body or exposed areas. You required intermittent systemic therapy to ease your symptoms. The treatments required lasted a total of six weeks (does not have to be constant or consecutive) over a 12-month period.
- 60% Rating: Lesions cover over 40% of your body or exposed areas. Your systemic therapy is required on a near-constant basis over a 12-month period.
Interestingly, any health complications related to or caused by your porphyria cutanea tarda require separate diagnostic codes (38 CFR § 4.118), which will be rated separately by the VA.
According to the schedule of ratings, two or more conditions can be combined but only if they impact separate areas of your skin. If you have more than one skin condition that impacts the same area of skin, the VA will give you a disability rating based on the condition that has the highest rating.
Disability Benefits for Surviving Spouses and Dependent Children
If you are the surviving spouse or dependent child of a veteran who was diagnosed with PCT, you are eligible for benefits. Agent Orange benefits for survivors consist of compensation and health care benefits.
- Compensation: If you can prove that your spouse was exposed to Agent Orange and their death was caused by one of the diseases on the Agent Orange presumptives list, you might be eligible for Dependency and Indemnity Compensation. You can receive a monthly payment depending on when your spouse was diagnosed, his VA disability rating, and when/how long you were married.
- Health care: Under the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA), you can receive health care benefits as long as your spouse received a VA disability rating of 100% and you are not eligible for TRICARE or CHAMPUS.
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Woods and Woods – Helping Veterans and Their Surviving Family Members
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