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How often do you think a person can get sick before it becomes a serious concern? Many studies have shown that if you are sick more than two times a year, it is a concern. 

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I became deeply passionate about CVID when both my mom and I were diagnosed with this challenging immune deficiency. From the moment we received our diagnoses to the moment my mom passed away from it, I knew I wanted to pursue a career in healthcare to help others get the early detection they deserve. Every chance I get to talk about CVID, I take it—because raising awareness matters.

I believe others should care about this topic because so many people are silently struggling with autoimmune diseases, unaware of what's really going on in their bodies. Often, this is due to a lack of research, awareness, and proper testing options. Understanding the symptoms and knowing how to get tested can change—and even save—lives.

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What if being 'sick all the time' wasn’t just bad luck? The truth is, for people with CVID, their immune system is failing them—and most don’t even know it. Early detection can make all the difference.

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Despite its name, Common Variable Immunodeficiency (CVID) is far from common. According to UPMC Hospital of Pittsburgh, it affects only about 1 in 30,000 people. That’s why awareness is so critical.

“CVID (Common Variable Immunodeficiency) | UPMC Children’s.” UPMC Children’s Hospital of Pittsburgh, www.chp.edu/our-services/rare-disease-therapy/conditions-we-treat/cvid-syndrome#:~:text=How%20Common%20Is%20CVID%20in,affects%20one%20in%2025%2C000%20people.

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If you would like to test your knowledge on CVID, here is a short anonymous poll. Feel free to leave any commentary or questions.

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According to the Immune Deficiency Foundation, Common Variable Immune Deficiency (CVID) is a primary immunodeficiency disorder characterized by abnormally low levels of antibodies, making individuals more vulnerable to recurrent infections. In addition to infections, CVID can also increase the risk of autoimmune diseases, granulomas, and certain types of cancer.

This video discusses the challenges of living with this primary immunodeficiency disorder, including frequent infections and the emotional toll of a delayed diagnosis. Michele emphasizes the importance of awareness, early detection, and the support she found through the Immune Deficiency Foundation (IDF). Her story aims to educate others about CVID and inspire those facing similar health issues.

Common Variable Immune Deficiency (CVID) | Immune Deficiency Foundation. primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/common-variable-immune-deficiency-cvid.

Immune Deficiency Foundation. “Common Variable Immune Deficiency (CVID) - IDF Reel Stories, the Condon Family.” YouTube, 7 July 2021, www.youtube.com/watch?v=LkQkcg_DWOY.

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Common Variable Immune Deficiency (CVID) - IDF Reel Stories, The Condon Family

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The study of CVID has evolved significantly over the past several decades. First identified in the 1950s, CVID was initially a poorly understood condition with limited treatment options. Over time, advances in immunology and technology led to the development of immunoglobulin replacement therapy, which drastically improved patient outcomes. Francisco  Bonilla notes that "early treatments focused mainly on infection control, but today, targeted therapies and genetic research are expanding treatment possibilities" (348). This historical perspective highlights the progress made in CVID research and treatment, while also emphasizing the need for continued scientific advancements.

Bonilla, Francisco A. “Practice Parameter for the Diagnosis and Management of Primary Immunodeficiency.” The Journal of Allergy and Clinical Immunology , 10 Nov. 2015,              https://www.jacionline.org/article/S0091-6749%2815%2900883-0/fulltext?utm_source

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How can CVID affect every day lives and what are the symptoms? 

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How can CVID affect every day lives and what are the symptoms? 

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CVID (Common Variable Immunodeficiency) can impact daily life in a variety of ways—often depending on the severity of the condition and how well it’s managed. Below are some of the major ways CVID affects overall health and quality of life.

Immune System & Health:

Frequent infections: Those with CVID are prone to reoccurring infections specifically in the ears, sinuses, and respiratory tract. These small infections can ultimately lead to bigger, more severe complications such as bronchiectasis which is defined by Immune Deficiency Foundation as "A condition characterized by permanent damage and scarring of the airways."

Fatigue: Chronic fatigue is a common symptom among CVID patients, significantly affecting their quality of life. Studies by Pub Med Central have shown that fatigue in CVID patients is associated with lower quality of life and higher mortality.

Unexplained weight loss: Unintentional weight loss may occur in people with CVID due to chronic infections, malabsorption, or inflammation in the gastrointestinal tract. This can affect energy levels and overall health.

Enlarged lymph nodes or spleen: Frequent illness can lead to an overactive spleen. In the absence of a properly functioning immune system, the spleen acts as a “backup” by filtering blood and fighting infection, which may cause it to become enlarged (a condition known as splenomegaly).

Lung Problems: In some individuals, CVID primarily affects the lungs, making even everyday tasks—like walking short distances—more difficult. This is often due to airway restriction or damage caused by ongoing infections or inflammation.

Hajjar, J., et al. “Fatigue and the Wear-off Effect in Adult Patients With Common Variable Immunodeficiency.” Clinical & Experimental Immunology, vol. 194, no. 3, Aug. 2018, pp. 327–38. https://doi.org/10.1111/cei.13210.

primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/common-variable-immune-deficiency-cvid.

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Being diagnosed with CVID is not a simple task. For many of us, it takes years to finally get the answers we deserve. Knowing the symptoms and asking for the right tests early on can make a huge difference.

“Diagnosis is based on a patient’s history of recurrent infections, laboratory findings of low immunoglobulin levels, and failure to respond to vaccines” (Immune Deficiency Foundation, n.d.). Although there isn’t a single definitive test for Common Variable Immunodeficiency (CVID), physicians often rely on a series of steps to identify it. These typically include repeated blood tests to check immunoglobulin levels (particularly IgG, IgA, and IgM), vaccine response testing to assess how the immune system reacts, and genetic testing in some cases to look for known mutations linked to CVID.

Immune Deficiency Foundation.” Common Variable Immune Deficiency (CVID), Immune Deficiency Foundation, n.d., https://primaryimmune.org/about-primary-immunodeficiencies/types-of-pi/common-variable-immune-deficiency. Accessed 21 Apr. 2025.

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First round of testing for my journey to answers.

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Take it from me—being constantly stuck with needles, lying in hospital beds, and still not having answers is not how anyone should have to live.
Early detection matters. Trust your body, and don’t give up until someone listens.

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Here is a fake patient example that visualizes the process. CVID symptoms are bolded.

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Patient Profile: Emily Benchman

Basic Info:

Name: Emily Benchman

Age: 26

Gender: Female

Location: Suburban Illinois

Occupation: Middle school teacher

Lifestyle: Active, enjoys hiking and yoga (when healthy)

Medical History:

Has had recurrent sinus infections and bronchitis since age 18

Multiple ear infections in her early 20s

Frequent fatigue and digestive issues (bloating, chronic diarrhea)

Took antibiotics at least 7 times in the past year

Testing & Diagnosis:

IgG & IgA levels tested low in bloodwork

Failed to produce antibodies after Pneumovax and flu vaccine

Diagnosed with Common Variable Immunodeficiency (CVID) after referral to an immunologist

Genetic testing revealed no known mutation, which is common in CVID

Treatment Plan:

Started SCIG therapy (subcutaneous immunoglobulin infusions) at home every week

Regular check-ups with immunologist and GI specialist

Takes precautions to avoid sick environments (especially in school)

Life Impact:

Missed 15+ days of work due to infections before diagnosis

Experiences anxiety about being in public places

Now feels more in control but still struggles with energy levels and long recovery time after minor illnesses

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CVID can be diagnosed at any age, but it most commonly shows up in two age ranges: between 5–10 years old and between 20–40 years old. The earlier it is caught, the easier it is to manage and treat. If diagnosis is delayed until later in life, there’s a higher risk not only of living with untreated CVID, but also of developing other serious health issues, like certain types of cancer.

Tsai, Meng-Han, et al. “The Relationship of Chronic Disease Conditions to Mental and Physical Health Among Cancer Survivors.” Supportive Care in Cancer, vol. 31, no. 6, May 2023, https://doi.org/10.1007/s00520-023-07841-0.

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CVID is a lifelong condition, there is no cure. With the right care, symptoms can be managed effectively. Here’s how:

Immunoglobulin Replacement Therapy (IgRT): This is the main treatment. It provides missing antibodies through IV or infusions to help prevent infections. Most patients receive this treatment every few weeks (Including myself).

Antibiotics: Doctors may prescribe antibiotics for infections or as a preventative measure for some of the more chronic issues like sinus infections or bronchitis that could turn worse.

Regular Monitoring: Patients need regular checkups to watch for complications such as lung disease or lymphoma. This includes blood tests, CT scans, and pulmonary exams. This makes living a "normal" life difficult when you have to schedule life around a doctors appointment.

Avoiding sick people, practicing good hygiene, and staying up to date on vaccines are key ways to stay healthy. Although this is no "cure" yet several new cost effective medications are being tested in hopes to advance information around CVID.

Common Variable Immunodeficiency Symptoms, Diagnosis and Treatment. www.aaaai.org/conditions-treatments/primary-immunodeficiency-disease/common-variable-immunodeficiency#:~:text=CVID%20is%20treated%20with%20immunoglobulin,regularly%20and%20are%20life%2Dlong.

“National Institutes of Health (NIH).” National Institutes of Health (NIH), www.nih.gov.

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This powerful TED Talk by Vicky Potter has stayed with me ever since I watched it. It gives an honest, emotional look into what it feels like to live with a chronic illness that isn’t visible from the outside.

I personally connect with so much of what she says. I used to be incredibly active, always on the go—until I was diagnosed with a chronic illness that changed everything. Now, most of my time is spent at home.

One thing that hit me hard was when Vicky said she often feels "invisible," because on the outside, she looks fine—but inside, her body is fighting a daily battle. That’s something I feel every single day.

Her talk puts into words what so many of us feel but struggle to explain. If you want to understand what it’s like to live with an invisible illness, this is a must-watch.

Potter, Vicky. “Disability Not Invisibility: My Experience With Chronic Illness.” TED Talks, www.ted.com/talks/vicky_potter_disability_not_invisibility_my_experience_with_chronic_illness.

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Disability Not Invisibility: My experience With Chronic Illness.

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Victoria “Vicky” Potter is a sophomore in the Honors College at FSU, majoring in Neuroscience. She was born and raised in Memphis, TN, and is a first generation American. She is a part of two student groups on campus: RENEW (Realizing Everyone’s Need for Emotional Wellness), a peer education group organized to teach students how to deal with stress and time management, and Phi Delta Epsilon, the only medical fraternity on campus that fundraises for Children’s Miracle Network Hospitals. Vicky is also certified as an EMT in three states and works as an Emergency Room Technician at Capital Regional Medical Center. Next semester, you can find her teaching the Honors class of 2023 as a 2019 Honors Colloquium Leader.

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From countless doctor visits to feeling isolated because I “look fine,” CVID has taught me how invisible illnesses can affect your mental, physical, and emotional health. But it’s also taught me strength—how to advocate for myself, how to listen to my body, and how to find community with others who understand. If anyone can get an early diagnosis to problems that just won't go away, my goal has been met. Spreading awareness to allow more research to be sparked on this uncommon immunodeficiency means the world to me.

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CVID is often overlooked, misunderstood, or misdiagnosed—but it doesn’t have to be that way. The more we learn, the more we can support people living with invisible illnesses like this one. My hope with this project was not only to share my own experience but to help others understand what CVID really is and how deeply it can affect someone’s life.

If this project made you curious, I encourage you to take the next step:

Learn more at https://primaryimmune.org

Talk to someone you know who lives with a chronic or invisible illness

Be the person who listens, supports, and believes—even if you can’t see it

Together, we can create more awareness, more compassion, and hopefully, more answers for those still searching.

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I have these stickers everywhere. My mom lived a legacy that will never be forgotten. She lived every single day by "choosing joy" through living with CVID. I encourage everyone no matter what you are going through, to wake up and choose joy.