Before a Primary Immunodeficiency Diagnosis
Living with Primary Immunodeficiency can be exhausting and isolating. You may get sick more often, stay sick longer, and feel dismissed when patterns are missed. Many people bounce between specialists and juggle insurance hurdles while searching for answers. You are not alone, and you deserve informed, compassionate care.
In this blog series, patient and advocate Kerry will share her experience and provide key information and tools for navigating Primary Immunodeficiency before and after diagnosis.
For many people with Primary Immunodeficiency, the early signs do not look like something rare or serious. They often mimic everyday health problems, which is why they are easy to dismiss. These include:
- Recurring sinus infections or bronchitis
- Food poisoning that knocks you down harder and longer than others around you
- Pneumonia or lung infections that keep coming back
- Gut infections or "stomach bugs" that linger weeks longer than family members
- Persistent ear infections, especially in childhood
- "Random" fevers with no clear cause
It is not just the frequency of illness, but the severity and how long it takes to recover compared to others in the household. Many people also present with autoimmune conditions or broader immune dysregulation before their true diagnosis is uncovered. They may be told they have lupus, rheumatoid arthritis, chronic fatigue, or another autoimmune disease without anyone recognizing an underlying immunodeficiency.
Learn more about the symptoms of Primary Immunodeficiency.
Because symptoms are scattered across different body systems, patients often cycle through multiple doctors before someone considers testing immune function. Examples include:
- Primary care doctor: frequent antibiotic prescriptions, recurring infections
- ENT: sinus and ear infections, enlarged tonsils or adenoids
- Pulmonologist: pneumonia, chronic cough, bronchiectasis
- Gastroenterologist: chronic diarrhea, gut infections, food intolerances
- Rheumatologist: unexplained joint pain, autoimmune overlap
- Infectious disease specialist: infections that do not respond to treatment
- Emergency physicians: urgent cases like sepsis, septic shock, or unexplained fevers
Before my diagnosis, I kept getting sick more often and staying sick longer than others in my home. Eventually, an infection escalated into sepsis, a life-threatening emergency. That experience underscores why it is critical to track patterns and push for thorough immune testing rather than settling for repeated short-term treatments.
Read more about Kerry’s story here.
There are many different categories of immune deficiency, which can be either primary (inherited or genetic) or secondary (caused by another condition or treatment). Understanding the category your immunodeficiency falls into helps guide both treatment and long-term management. Primary immunodeficiencies include:
- Common Variable Immunodeficiency (CVID)
- Severe Combined Immunodeficiency (SCID)
- Selective IgA Deficiency
- Chronic Granulomatous Disease
- Hyper IgM Syndrome
- Complement Deficiencies
- Specific Antibody Deficiency
- IgG Subclass Deficiency
About Kerry
Kerry Hecht is the Founder and CEO of 10k Humans, 10k Voices and 10k Spaces, and a lifelong market researcher with more than 30 years of global experience helping organizations understand people, behavior and the experiences that shape decisions. Her work is grounded in listening closely, finding patterns that are easy to miss, and turning complex human stories into information people can act on.
Kerry also lives with Common Variable Immunodeficiency (CVID) and receives subcutaneous immunoglobulin therapy after years of recurrent illness and a life-threatening episode of sepsis. Her path to diagnosis taught her how difficult it can be to connect the dots across symptoms, specialists, laboratory results, treatment decisions and insurance barriers - especially while sick.
In this guide, Kerry brings those two perspectives together: a career spent helping people articulate their experiences and firsthand knowledge of navigating primary immunodeficiency as a patient. Her goal is to make the journey toward answers, treatment and stability clearer and less isolating for the people and families who come next.
