How To Confront Living With CVID With Symptoms And Treatments?

Living with a chronic illness can be challenging, but you’re not alone. Millions of Americans suffer from conditions like diabetes, heart disease, and cancer. However, there’s one chronic illness that you may not have heard of: common variable immunodeficiency (CVID).

CVID is a disorder that affects the immune system, making it difficult for the body to fight off infections. People with CVID are more susceptible to colds, flu, and other illnesses.

They may also experience chronic fatigue, weight loss, and diarrhea. While there is no cure for CVID, treatments can help to improve symptoms and prevent serious health complications. In this article, we’ll explore the severe condition of living with CVID and how to treat it.

If you or someone you love has CVID, it’s important to learn as much as you can about the condition and how to manage it. With the right support, you can live a full and healthy life despite your diagnosis.

How Serious And Complicated is Living With CVID?

Common Variable Immune Deficiency (CVID) is a serious condition that can cause a number of health problems. People with CVID have problems producing antibodies, which puts them at risk for infections.

CVID can also cause inflammation in the lungs, digestive tract, and other parts of the body. In severe cases, CVID can lead to organ damage and even death. Early diagnosis and treatment are essential for managing CVID and preventing serious complications.

Here are five things you should know about this serious condition.

  1. CVID is a disorder of the immune system that prevents the body from producing antibodies. Without antibodies, people with CVID are at risk for infections.
  2. CVID can cause inflammation in the lungs, digestive tract, and other parts of the body. Inflammation can damage organs and lead to serious health problems.
  3. In severe cases, CVID can be life-threatening. Early diagnosis and treatment are essential for managing the condition and preventing complications.
  4. There is no cure for CVID, but treatment can help people manage the condition and prevent serious health problems.
  5. Anyone can develop CVID, but it is more common in people of certain ethnic groups, such as Caucasians of Northern European descent. If you think you or someone you know may have CVID, it is important to see a doctor for diagnosis and treatment.
A Picture of Inflammation in Lungs

10 Strong CVID Symptoms To Be Aware Of

CVID, or common variable immunodeficiency, is a condition that affects the immune system. People with CVID are more susceptible to infections and may experience a range of other health problems. Here are 10 CVID symptoms to be aware of:

  1. Frequent infections: People with CVID are prone to developing bacterial and viral infections. These may include respiratory infections, ear infections, sinus infections, and gastroenteritis.
  2. Autoimmune disorders: CVID can also cause autoimmune disorders such as arthritis, lupus, and Crohn’s disease.
  3. Inflammation: Inflammation is a common symptom of CVID, and can affect different parts of the body including the skin, joints, and gut.
  4. Fatigue: Fatigue is a common symptom of CVID, and can range from mild to debilitating.
  5. Fever: Fever is another common symptom of CVID, and can often be accompanied by chills and sweats.
  6. Weight loss: Weight loss can occur as a result of the increased energy needs of the body due to CVID. Additionally, infants with CVID may fail to gain weight at the expected rate.
  7. Enlarged lymph nodes: Enlarged lymph nodes are often a sign that the body is fighting an infection. However, in people with CVID, enlarged lymph nodes can also be a sign of inflammation or autoimmunity.
  8. Anemia: Anemia is a condition in which there is a decrease in red blood cells or hemoglobin (the oxygen-carrying protein in red blood cells). Anemia can cause fatigue, shortness of breath, and pale skin.
  9. Bleeding: Bleeding can occur due to low levels of platelets (blood cells that help with clotting) in people with CVID. nosebleeds and easy bruising are common signs of this symptom.
  10. Swelling: Swelling can occur in different parts of the body in people with CVID, most commonly the legs (known as edema). Swelling may also occur in the abdomen (known as ascites) if there is fluid build-up around the liver or spleen.

10 Common CVID Causes Playing The Main Role In This Severe Infection

There is no one known cause of CVID, but there are many factors that may play a role. Here are 10 possible causes of CVID:

  1. Autoimmune disorders: Autoimmune disorders occur when the body’s immune system mistakenly attacks healthy tissue. This can cause problems with the production of antibodies, which can lead to CVID.
  2. Family history: CVID is often seen in families, which suggests that genetic factors may play a role in its development.
  3. Infections: Infections, such as Epstein-Barr virus or HIV, have been linked to the development of CVID.
  4. Malnutrition: Malnutrition can cause problems with the immune system and may be a factor in the development of CVID.
  5. Medications: Certain medications, such as those used to treat cancer or autoimmune disorders, can suppress the immune system and may lead to CVID.
  6. Radiation therapy: Radiation therapy can damage the cells that produce antibodies, leading to CVID.
  7. Surgery: Surgery on the thymus (a gland that helps to regulate immunity) can disrupt the normal development of the immune system and may cause CVID.
  8. Severe burn injuries: Severe burn injuries can also damage the cells that produce antibodies, leading to CVID. 
  9. Allergies: Allergies are a common problem in people with CVID, and they may be caused by an overactive immune response to harmless substances.
  10. Celiac disease: Celiac disease is an autoimmune disorder that affects the digestive system and can lead to malnutrition. People with celiac disease may be at increased risk for developing CVID.
A Man Experiencing Allergy

CVID Life Expectancy 2022

Although the life expectancy for people with CVID has gradually increased over the past few years, it is still relatively low compared to the general population. In 2022, the life expectancy for people with CVID is estimated to be between 50 and 60 years.

This is a significant increase from the life expectancy of 40 years that was estimated in 2000. However, it is still considerably lower than the 75-year life expectancy of the general population.

The main cause of death for people with CVID is an infection, which can often be severe and difficult to treat. Other causes of death include cancer and autoimmune diseases.

While there is no cure for CVID, treatments are available that can help to improve quality of life and extend life expectancy. With early diagnosis and proper treatment, people with CVID can enjoy a long and healthy life.

CVID Life Expectancy By Age

It is important to know the life expectancy by age when you have CVID. Life expectancy is the number of years a person is expected to live based on their current age, health, and lifestyle.

The average life expectancy in the United States is about 79 years old. However, people with chronic illnesses like CVID tend to have a shorter life expectancy.

Studies have shown that the median life expectancy for men with CVID is about 63 years old, and for women, it is about 66 years old. This means that half of all men with CVID will live to be 63 years old or less, and half of all women will live to be 66 years old or less.

There are many factors that can affect life expectancies, such as the severity of the illness, access to treatment, and lifestyle choices. However, age is one of the most important factors.

As people get older, their bodies become less able to fight off disease and heal from injuries. This makes older adults more susceptible to complications from illnesses like CVID.

Age also affects life expectancy because it is often used as a marker for other underlying health conditions. For example, someone who is 65 years old may be considered at higher risk for developing complications from CVID because they are considered elderly.

While life expectancy can be affected by many different factors, age is one of the most important ones to consider when you have CVID.

Is CVID Considered Immunocompromised?

Immunocompromised individuals are more susceptible to infection because their bodies are not able to mount an effective immune response. Common variable immunodeficiency (CVID) is one of the most common primary immunodeficiencies, and it is characterized by a reduction in the production of antibodies.

This can leave patients more susceptible to infections, as well as other serious health problems. Although the exact cause of CVID is unknown, it is believed to be caused by a combination of genetic and environmental factors.

Treatment for CVID usually involves therapy with intravenous immunoglobulin (IVIG) or immunotherapy. In some cases, patients may also require antibiotics or corticosteroids. With proper treatment, most people with CVID can enjoy a good quality of life.

5 Major Steps Of CVID Diagnosis

The steps to diagnosing CVID are as follows: 

  1. A complete blood count (CBC), measures levels of white blood cells, red blood cells, and platelets. This can help to rule out other conditions that cause similar symptoms. 
  2. A measuring of immunoglobulin levels in the blood. This helps to determine whether the patient’s immune system is functioning properly. 
  3. A skin biopsy can help to rule out other conditions that cause similar symptoms. 
  4. A chest x-ray can help to rule out other infections that may be causing the symptoms. 
  5. A computed tomography (CT) scan or magnetic resonance imaging (MRI) scan, can help to rule out tumors or other conditions that may be causing the symptoms.

8 Important CVID Treatment Guidelines To Keep In Mind

There is no one-size-fits-all approach to treating CVID, but there are some general guidelines that can help patients and their caregivers manage the condition. Here are 8 treatment guidelines for CVID:

  1. Comorbidities should be treated: Patients with CVID may also have other conditions, such as autoimmune diseases or allergies. It is important to treat these comorbidities as well as CVID itself.
  2. Immunoglobulin replacement therapy: Immunoglobulin replacement therapy is the main treatment for CVID. This involves infusing patients with immunoglobulins, which help to boost their immune system function.
  3. Antibiotics: Antibiotics may be prescribed to prevent or treat infections.
  4. Vaccinations: Vaccinations are important for preventing infections, especially in patients with CVID.
  5. Steroids: Steroids may be used to treat inflammation or reduce the risk of infection.
  6. Bone marrow transplant: In some cases, a bone marrow transplant may be recommended as a treatment for CVID. This is a risky procedure, but it can be effective in some cases.
  7. Clinical trials: Clinical trials are ongoing for new treatments for CVID, and patients may want to consider enrolling in a trial if one is available.
  8. Supportive care: Supportive care is important for all patients with CVID, including emotional support and education about the condition.

5 Beneficial Ways Of How To Manage CVID

A diagnosis of common variable immunodeficiency (CVID) can be a daunting prospect. However, with early diagnosis and treatment, most people with CVID can lead long, healthy lives. There are five key steps in managing CVID:

  1. Identifying the condition: The first step is to get a confirmed diagnosis of CVID. This usually involves a combination of blood tests and imaging studies.
  2. Treating the underlying causes: Once CVID is diagnosed, it is important to treat any underlying causes. This may involve taking medications to control infections or inflammation.
  3. Replacing missing antibodies: People with CVID often have low levels of antibodies in their blood. As a result, they may need regular injections of immunoglobulin to replace the missing antibodies.
  4. Preventing infections: People with CVID are at increased risk for infections. As a result, it is important to take steps to prevent infections, such as getting vaccinated and practicing good hygiene.
  5. Managing symptoms: In addition to treating the underlying cause of CVID, it is also important to manage any symptoms that develop. This may involve taking medications to relieve fatigue or pain. With early diagnosis and treatment, most people with CVID can lead long, healthy lives.

5 Common Complications Associated With CVID

CVID, or common variable immunodeficiency, is a disorder that affects the immune system. People with CVID may have a variety of symptoms, including recurrent infections, autoimmune disorders, and inflammation.

Complications associated with CVID can be serious, and they may even lead to death. The most common complications associated with CVID include:

  1. Recurrent infections: People with CVID are more susceptible to infection than the general population. They may have recurrent episodes of pneumonia, ear infections, and sinus infections. In addition, they may be at risk for more serious infections, such as meningitis or sepsis.
  2. Autoimmune disorders: Autoimmune disorders occur when the body attacks itself. People with CVID are more likely to develop autoimmune disorders, such as lupus or rheumatoid arthritis.
  3. Inflammation: Inflammation is a response to injury or infection. People with CVID often experience chronic inflammation, which can damage tissues and organs. Inflammation is also a major contributor to autoimmune diseases.
  4. Malignancy: People with CVID are at an increased risk for developing lymphoma, a type of cancer that affects the lymphatic system. Lymphoma is the most common cause of death in people with CVID.
  5. Other complications: People with CVID may also experience problems such as fatigue, weight loss, and gastrointestinal issues. While these complications are not life-threatening, they can significantly impact the quality of life.
A Man Lying on Table Due to Fatigue - Living With CVID

Conclusion

While a cure for CVID remains elusive, treatments have come a long way in recent years and many people with the condition are able to lead relatively normal lives. With early diagnosis and proper treatment, most people with CVID are able to maintain good health and live active lives.

However, it is important to be aware of the potential risks and complications associated with the condition. People with CVID are at increased risk for certain infections and autoimmune diseases, and they may also experience problems with fertility. However, with careful management, many people with CVID are able to lead healthy and fulfilling lives.

Frequently Asked Questions

What is the Common Variable of Immune Deficiency (CVID)?

Common Variable Immune Deficiency (CVID) is a primary immunodeficiency disorder, which is characterized by an impaired ability of the body to produce antibodies after an infection or vaccination.

It is caused by mutations in one of many genes that are involved in regulating the development, function, and signaling of B cells, which are responsible for producing antibodies.

CVID usually occurs during childhood but can also be present later in life. It affects both males and females equally and is believed to be underdiagnosed.

What are the symptoms of CVID?

The most common symptom of CVID is recurrent infections due to reduced levels of antibodies. Patients may experience frequent colds, pneumonia, and sinus infections as well as other digestive, respiratory, and skin infections.

In addition, they may suffer from more serious complications such as chronic inflammation of the lungs or gastrointestinal tract, and autoimmune diseases such as rheumatoid arthritis, anemia, or lymphoma. Symptoms may vary from person to person and depend on their specific genetic mutation. 

How is CVID treated?

The treatment for CVID typically involves lifelong replacement therapy with intravenous immunoglobulin (IVIG). IVIG provides patients with healthy antibodies to replace those that are missing due to their condition.

Additional treatments may include antibiotics and antifungal medications to treat recurrent infections, medication to suppress the immune system if autoimmune diseases develop, nutritional support if malabsorption occurs due to gastrointestinal problems, or chemotherapy if lymphoma develops.

Depending on the individual case additional treatments such as physical therapy or transfusions might also be required.

What is it like to live with CVID?

Living with CVID can be challenging, as the condition affects many aspects of life. CVID is an immunodeficiency that can have a wide range of symptoms and complications.

Those affected by CVID may experience recurrent infections, fatigue, abdominal pain, joint pain and swelling, fever, and other autoimmune issues. They may also be at increased risk for certain types of cancers.

How serious is CVID?

CVID is a serious condition that can cause recurrent infections and other complications over time. In some cases, CVID may lead to organ damage or even death if left untreated. It’s important for those affected by CVID to work with their doctor to manage the symptoms and reduce the risk of long-term health issues.

What helps with CVID?

Fortunately, treatment can help manage CVID and reduce the risk of long-term complications. Treatment typically consists of regular infusions with immunoglobulin (IG) therapy to boost the immune system.

Other treatments may include medications to treat infections, antibiotics, or even surgery if necessary. It’s important for those affected by CVID to work with their doctor to find the best treatment plan for them.

Does CVID get worse over time?

CVID is a chronic condition that can worsen over time. However, with proper treatment and monitoring, the progression of CVID can be managed and complications can be minimized.

It’s important for those affected by CVID to keep up with their doctor visits and follow their treatment plan in order to reduce the risk of long-term health issues.

Can people with CVID have kids?

Yes, many people with CVID are able to have healthy children. It’s important for those affected by CVID to discuss family planning and potential risks with their doctor.

In some cases, additional treatments or medications may be needed before conceiving in order to reduce the risk of complications during pregnancy.

With proper care and monitoring, those affected by CVID can have healthy children.

Does CVID cause digestive issues?

Yes, CVID can cause digestive issues such as abdominal pain and nausea. In some cases, the immune system may become overactive and attack the GI tract, leading to additional symptoms such as diarrhea or constipation.

It’s important for those affected by CVID to work with their doctor to identify the underlying cause of digestive issues and create a treatment plan that works best for them.

What percentage of people have CVID?

CVID is a rare condition that affects approximately 1 in 25,000 people. It’s estimated that 70-80% of those affected by CVID are diagnosed after the age of 10, and it can affect both genders.

Treatment for CVID requires regular monitoring and infusions with immunoglobulin therapy to boost the immune system. With proper care, those affected by CVID can manage their symptoms and reduce the risk of long-term complications.

How long does CVID last?

CVID is a chronic condition that can last for many years and requires ongoing treatment to manage symptoms.

With proper care and monitoring, those affected by CVID can enjoy an improved quality of life. It’s important for those affected by CVID to work with their doctor to create a treatment plan that works best for them in order to reduce the risk of long-term complications.

Why are CVID patients called zebras?

CVID patients are often referred to as “zebras” because the condition is rare and can be difficult to diagnose. The term was initially used by doctors when diagnosing CVID, who would say “when you hear hoofbeats, think of a horse, not a zebra.”

This means that it’s important to consider all possible causes of a patient’s symptoms, even if they are uncommon or rare.

It serves as an important reminder for doctors to look beyond the most common explanations and consider rarer diagnoses like CVID.

Does CVID cause fatigue?

Yes, CVID can cause fatigue due to an inadequate immune system. Fatigue is a common symptom of CVID and it’s important for those affected to work with their doctor to create a treatment plan that works best for them.

This may include medications, infusions with immunoglobulin therapy, or other treatments in order to reduce the risk of long-term complications.

Can CVID cause depression?

Yes, CVID can cause depression due to the physical and emotional strain of living with a chronic condition. It’s important for those affected by CVID to be aware of the signs and symptoms of depression and seek help if needed.

In some cases, medications or counseling may be recommended in order to improve the quality of life. Working with a doctor to create an effective treatment plan can help reduce the risk of long-term complications.

Does CVID shorten life expectancy?

No, CVID does not shorten life expectancy. However, it’s important for those affected by CVID to work with their doctor to create a treatment plan that works best for them in order to reduce the risk of long-term complications.

With proper care and monitoring, people with CVID can enjoy an improved quality of life and lead a long and healthy life.

References:

Nicholas L. Rider, Carleigh Kutac, Joud Hajjar, Chris Scalchunes, Filiz O. Seeborg, Marcia Boyle, and Jordan S. Orange. (May 23, 2017). Health-Related Quality of Life in Adult Patients with Common Variable Immunodeficiency Disorders and Impact of Treatment. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5489588/

M. Bayrhuber,  I. Tinsel,  S. Goldacker,  G. Kindle,  K. Warnatz,  E. Farin, and A. Nieters  (Jan 13, 2019). Perceived health of patients with common variable immunodeficiency – a cluster analysis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6422638/

Lisanne M. A. Janssen ( March 23, 2021). Lessons Learned From the Clinical Presentation of Common Variable Immunodeficiency Disorders: A Systematic Review and Meta-Analysis. https://www.frontiersin.org/articles/10.3389/fimmu.2021.620709/full

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