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.

“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.

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.

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

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.

“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.

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

  
  

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.

• 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.

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.

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.