Lack of awareness prolongs CVID diagnosis Blog Image

Among the CVID patient community and advocacy organizations, many agree that a lack of awareness prolongs CVID diagnosis. In 2017 I found out that I was born with Common Variable Immunodeficiency. CVID is a genetic Immune system disorder in which there are low levels of antibodies to fight off infections. 

These were my own symptoms of cvid

The “variable” in its name refers to the wide variety of symptoms and their severity found in patients. This makes it extremely difficult for doctors to diagnose and potential patients to recognize. Although awareness is on the rise in part because of the efforts of organizations like The Immune Deficiency Foundation and The Jeffrey Modell Foundation, there are still many doctors and people in general who are unfamiliar with Primary Immunodeficiencies and CVID in particular.

My Own Prolonged CVID Diagnosis Despite Numerous Warning Signs

For example, I wasn’t diagnosed until I was 41 even though I was often sick, seemingly without explanation, throughout my life. (You can read my diagnosis story here!) Case in point, I had never heard of CVID when I was diagnosed (neither had any of my friends or family!).

Below were some of the CVID symptoms I experienced:

  • Unexplained failure to thrive and hospitalization at just a few months old
  • Frequent Colds
  • Recurrent Tonsillitis
  • Repeated Swollen Lymph Nodes in my neck
  • Stomach Pain and digestion issues
  • Headaches
  • Recurrent Strep Throat
  • Numerous Urinary Tract and Bladder Infections which eventually required a nerve stimulator implanted in my back to allow the bladder to fully empty
  • Unexplained internal infection of C-section incision 
  • Closer to my diagnosis, I experienced extreme fatigue, weight loss and body pain that confined me to my bed most days.

Why did the many, many doctors I saw throughout my childhood and the ones I consulted as an adult miss the underlying cause of so much illness? 

Probably for numerous reasons. 

Maybe my parents (and later I) did not provide a comprehensive enough look at my health history. Perhaps each doctor focused on doing what they could to treat my symptoms and provide quick relief. It could have been that the doctors I saw were not familiar with CVID. Whatever the reasons, we (i.e. me, my doctors) missed the clues.

Spreading Awareness Can Prevent a Prolonged CVID Diagnosis

Now that I know about and have CVID, I feel a great responsibility to spread awareness. With awareness, doctors can provide faster diagnosis of CVID and those with similar symptoms might recognize their story in mine.

Now it’s your turn!

Click here to download the Jeffrey Modell Foundation’s 10 Warning Signs of Primary Immunodeficiency and post to spread the word!

10 Warning Signs of Primary Immunodeficiency

Stay Strong My Zebra Friends!

Susan Alynne CVID Signature


Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.