You’ve probably heard of the human immunodeficiency virus (HIV) before, but how does it compare to primary immunodeficiency (PI)? If you or a loved one is living with PI, it’s natural to wonder how other immune conditions such as HIV are related.
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One key difference is that HIV is a secondary immunodeficiency. Most primary immunodeficiency conditions are inherited from parents through the genes a person is born with. HIV, on the other hand, usually develops later in life after coming into contact with the virus. A baby can be born with HIV if their mother has the virus during pregnancy, childbirth, or breastfeeding, but this is rare.
In this article, we’ll break down the important differences between primary and secondary immunodeficiency conditions. We’ll also explain how HIV affects the immune system, and why early blood testing and treatment are so important.
Your immune system’s job is to protect you from outside invaders, like viruses, bacteria, fungi, and parasites. Think of it as your body’s security team — always on patrol, spotting trouble, and calling in reinforcements when needed. When certain parts don’t work well, it means you may have an immune deficiency. Not all immune deficiencies are the same, though. They can differ in their causes, how serious they are, and how they affect the body.
Primary immunodeficiency conditions are caused by mutations (changes) in a person’s genes. These changes affect how the immune system works from birth. For some people, a diagnosis may not come until they are adults, often after years of repeated infections.
There are more than 500 known PI diseases. Most conditions are rare on their own, but together, they affect between 1 in 1,000 to 1 in 5,000 people. These conditions target distinct parts of the immune system, including:
Some more common types of PI include:
Symptoms of PI vary depending on the specific disease. However, prolonged or recurrent infections are common among most of them. People with PI may need lifelong care to manage their condition. This treatment can include prophylaxis (medication to prevent infections) and regular vaccines. Sometimes, it may also involve immunoglobulin therapy to help boost immune defenses.
PI is a lifelong condition, but with proper treatment started early, many people can live long and healthy lives.
Secondary immunodeficiency conditons happen when something outside the body harms the immune system. Unlike PI conditions, they aren’t inherited, so they can’t be passed down from your parents, except in rare cases when HIV passes from mother to baby. They develop later in life because of another condition, certain treatments, infections, or exposure to harmful chemicals or radiation.
HIV is one of the most common examples of a secondary immunodeficiency. Other causes of secondary immunodeficiency include:
Symptoms of secondary immunodeficiency are often similar to those of PI. These can include frequent or long-lasting infections — especially those that are hard to treat or keep returning.
Doctors use blood tests to figure out what’s going on. Some people have low levels of neutrophils (a type of white blood cell). Others may not make enough antibodies. Depending on the symptoms, your doctor might order more specialized tests to check how well your immune system is working. These tests usually only require a few small blood samples.
HIV is considered a secondary immunodeficiency because it develops after birth — it’s not inherited or present from birth. That’s why it’s known as acquired. HIV is spread through certain body fluids. This can happen by:
You can’t get HIV from touching, hugging, or shaking hands with someone.
Once HIV enters the body, it begins to damage the immune system. In some people, early symptoms may appear within two to four weeks after infection. However, not everyone develops noticeable symptoms during this early stage. In fact, HIV may stay in the body for years before symptoms appear. Over time, though, the virus weakens your ability to fight infections and certain types of cancer.
If HIV infection isn’t treated, it can lead to acquired immunodeficiency syndrome (AIDS). AIDS is considered the final stage of HIV infection. It happens when the immune system becomes so weak that it can no longer protect the body. With early HIV testing and treatment, most people with an HIV infection never develop AIDS.
HIV attacks the immune system by targeting CD4 T cells, a type of white blood cell that protects the body from germs. You can think of CD4 T cells as the commanders of your immune army — they direct other immune cells on when and how to fight. When HIV destroys these commanders, the rest of the immune system becomes less able to defend the body.
Over time, as more of these cells are lost, T-cell counts drop to dangerously low levels. The immune system becomes so weak that it can’t fight off infections, leading to immunosuppression and a higher risk of serious illness.
In the early stage of an HIV infection, about half of the people don’t feel sick at all. Others may notice flu-like symptoms within weeks of the infection. These may include:
When the CD4 T-cell count falls below 200, a person is considered to have AIDS. At this stage, they’re more likely to develop opportunistic infections — certain fungal, viral, or bacterial infections that usually don’t affect people with healthy immune systems.
People diagnosed with AIDS also more likely to get certain types of cancer, such as:
There’s no cure for HIV yet, but the available treatments work very well. The main treatment option is antiretroviral therapy (ART). These medicines stop the virus from making copies of itself. ART usually consists of two or three different drugs, and can help:
People with HIV may need other treatments to stay healthy, too. These might include:
Without proper HIV treatment, the virus will continue to damage the immune system and can potentially lead to AIDS. However, this is avoidable. Don’t let fear or stigma prevent you from seeking care. HIV is just like any other medical condition, and with proper treatment, it won’t hold you back from living a full and meaningful life.
One of the most effective tools for preventing HIV infection is pre-exposure prophylaxis (PrEP). PrEP is a medication that lowers the risk of getting HIV from sex or sharing of syringes. It works by stopping the virus from taking hold in your body if you’re exposed.
PrEP is recommended for people at high risk of getting HIV. This includes those with HIV-positive partners, people who inject drugs, or anyone who has unprotected sex.
Other ways to prevent HIV infection include using condoms, not sharing needles, and getting tested for HIV regularly. There’s also post-exposure prophylaxis (PEP) — a medicine you can take within 72 hours after a possible exposure.
The Centers for Disease Control and Prevention (CDC) recommends that everyone between the ages of 13 and 64 get tested for HIV at least once in their life. People at higher risk — such as those with new or multiple partners, or who inject drugs — should test more often.
For more info or to find free testing near you, visit gettested.cdc.gov.
HIV treatment has come a long way in the past few decades. With the right care, people living with HIV can live longer and healthier lives than ever before. If you have questions about HIV or other types of secondary immunodeficiency, don’t be afraid to talk to your doctor for the information and care you need to stay healthy.
On myPIteam, people come together to learn more about life with primary immunodeficiency disorders.
Have you or someone in your family been diagnosed with a primary immunodeficiency? What tips or insights would you like to share with someone newly diagnosed? Join the conversation and share your insights in the comments below.
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