There are some conditions and diseases that a person might not know what to do about if it affects them because they’re not as well-known as other diseases. Porphyria is just one of those types of diseases that can leave people wondering what is wrong and what they should do about it. People who have been diagnosed with Porphyria can experience a range of uncomfortable or even debilitating symptoms, and in some cases, getting the Social Security disability benefits that they need can be the best opportunity to continue to take care of themselves when they can’t go to work. And getting a knowledgeable attorney is the best way for someone with Porphyria to ensure that it’s filed correctly so that they have the best chance possible of receiving benefits for their illness.
What is Porphyria?
Porphyria is a rare condition that affects only about 20,000 Americans every year. When a person has Porphyria, a build-up of chemicals, called Porphyrins, in the body causes harm to the person. While porphyrins are essential to the functioning of hemoglobin, which helps the body bind iron and carry oxygen to other parts of the body’s tissues, too many porphyrins can do harm to the body.
There are a couple of types of porphyria, but regardless of the type, a problem with the production of heme is at the root of what causes the porphyria. There are eight different enzymes that are required to create heme. If a person is deficient in one of these enzymes, they will have porphyria. Which enzymes they’re lacking or short on will determine which kind of porphyria they have. With inadequate heme, porphyrins build up in the body. In acute porphyria, porphyrins build up in the nervous system, resulting in damage. In cutaneous porphyria, the buildup of porphyrins is in the skin. When a person with this type of porphyria is exposed to the sun, their skin is damaged.
Most cases of porphyria are caused by genetic defects. A person can get the genes for porphyria from both parents as recessive genes, or they can get porphyria from one parent who has porphyria as a dominant gene. There is also an acquired version, which requires that the person also expose themselves to triggers, such as sunlight, cigarette smoke, or excessive amounts of alcohol.
Symptoms of Porphyria
The exact symptoms that a person will experience will be dependent on the type of porphyria that they have. People with cutaneous porphyria will experience a number of the following symptoms, including sensitivity to light that causes burning sensations, swelling, blisters, and redness on the skin. They might also experience fragile skin, extra hair growth in some areas, and red or brown urine. Additionally, when the skin heals, it’s likely to have scars left behind and be extra fragile.
People who have acute porphyria have a separate set of symptoms from those experienced by people with cutaneous porphyria because the porphyria affects the nervous system rather than the skin. One of the most common symptoms of people with acute porphyria is severe abdominal pain, which might also be accompanied by nausea, vomiting, constipation, and diarrhea. Some people might also experience chest, leg, or back pain. Weakness or paralysis, numbness, tingling, and muscle pain are other signs of porphyria. Some people might even experience confusion, anxiety, and paranoia. Finally, some of the other common symptoms of porphyria include seizures, high blood pressure, breathing problems, rapid or irregular heartbeats, and brown or red urine accompanied with difficulties urinating.
Additionally, when a person with acute porphyria is in the middle of an attack, it can actually be life threatening. This is the time when someone with the disease is likely to experience high blood pressure, breathing problems, dehydration, and seizures. These experiences can also lead to kidney failure and liver damage.
Treatment for Porphyria
When a person has acute porphyria, their parts of their nervous system can begin to shut down or simply become dehydrated. That’s why an IV can sometimes be used to deliver much needed fluid and minerals to the bodies of people in the midst of an acute attack.
A blood transfusion might also be necessary for people with some types of porphyria because a transfusion can supply the necessary heme that people with porphyria are missing from their own blood. These transfusions are usually given during an acute episode that requires hospitalization.
Immunosuppressive drugs like hydroxychloroquine can also be used to reduce the immune response. Hydroxychloroquine is often given to patients with lupus and arthritis to reduce inflammation, but the same drug can also reduce inflammation in people with porphyria.
Carotene supplements are often used on people with cutaneous porphyria because carotene can help protect the skin against UV light waves found in sunlight. Carotene converts to vitamin A, which the body uses to strengthen eyes and skin. In fact, carotene can be effective in treating a wide variety of reasons for human photosensitivity.
Finally, people with cutaneous porphyria sometimes benefit from having blood drawn from their bodies. People with porphyria can sometimes accumulate excess iron in their bloodstreams, which can cause problems with the liver. When the blood with the excess iron is removed from their systems, their livers are more able to process their blood, and many of their problems with their skin will lessen.
Disability Benefits for Porphyria
People who are trying to win benefits for porphyria need to meet certain criteria in the Social Security Blue Book, which outlines the disability benefits for a wide variety of conditions.
People with cutaneous porphyria can gain benefits under Skin Disorders or Genetic Photosensitive Disorders. If skin lesions are present, the person has been suffering from the condition for at least 12 months, and has been unable to work outside of the home for at least 12 months, it’s likely that they’ll be eligible for benefits.
People with acute porphyria can also meet the requirements by showing evidence of having seizures or paralysis might also meet the qualifications of getting the Social Security benefits that they need.
If a claimant doesn’t meet the above criteria for porphyria, they can also apply under the medical vocational allowance, which will require the claimant to take a functional residual capacity test. In this process, a doctor will make up a list of what the patient can and can’t do. Then, the Social Security Administration will determine whether or not there’s anything that the claimant can do for work. When making this decision, the Social Security Administration employee who is reviewing the application will also look at the person’s previous work history to determine whether or not there’s any other work that’s available to them.
As with anytime that a person wants to make a claim for disability benefits, having clear and thorough medical records on hand can drastically help the person make a successful claim.
How We Can Help
There are several ways in which the team at Osterhout Berger Disability Law can help you receive the benefit you deserve. We help individuals who need to…
- Apply for Social Security Benefits and want to ensure everything is done right the first time
- Appeal a denial of Social Security Disability Benefits
- Appeal an existing denial of Long Term Disability (LTD) Benefits
If you are facing one of these situations due to Still’s Disease, please do not hesitate in reaching out. Our team of experienced attorneys are here to help, and your consultation is free.