Learning More About Primary Immune Deficiency Diseases

Mar 28, 2022 | News and Events

Imagine being sick several times in a year without much of a break in between. Now, imagine this happening year after year. That’s exactly what happened to Tommie Cassen in this video produced by the Immune Deficiency Foundation. Tommie suffers from one of the many types of PIDD called Common Variable Immune Deficiency (CVID). 

Did you know? It can take an average of twelve and a half years to receive a diagnosis of a Primary Immune Deficiency Disease (PIDD).

 

Why This Matters

The immune system helps us fight infections. People with PIDD have an immune system that does not work as it should. This means they are more likely to get and become severely ill from infections. People with PIDD are more likely to have autoimmune disorders and certain blood disorders. Because of their decrease in immunity, people with these types of disorders are also more likely to develop certain types of cancers.  

There are more than 400 types of PIDD, affecting about 500,000 people in the US today. It can develop at any age but is often diagnosed before age 20. One of the most frequently diagnosed types of PIDD is called Severe Combined Immunodeficiency (SCID). SCID is now part of the newborn screening in every state in the US. 

Some of the symptoms of PIDD include:

  • Regular infections 
  • Inflammation 
  • Low Platelet counts 
  • Delayed growth
  • Onset of an autoimmune disorder
  • Fatigue

Diagnostic testing usually begins with blood tests. Immunologists (commonly referred to as Allergists) are specially trained to treat these conditions. Early detection can prevent infections that can cause long-term problems. Treatment for PIDD is aimed at managing infections, boosting the immune system and stem cell transplantation.

    Treatment Options

    According to the National Cancer Institute, a stem cell transplant is a procedure involving the replacement of the patient’s stem cells with healthy stem cells — usually donated from a related or unrelated donor. Although this is the only available cure for PIDD, not everyone is a candidate, and it is not always successful. 

    Antibiotic use can be frequent due to infections, leading to side effects of their own like the development of resistance and yeast infections. Steroids are commonly used to suppress autoimmune responses, furthering the decrease in one’s immunity. 

    Immunoglobulin replacement therapy (IRT) assists with boosting immunity and is done by injection or infusion. IRT treatments only last a short time for managing symptoms and must be repeated every few weeks, at a minimum. Lifelong IRT is standard-of-care treatment but accrues high annual costs ($30,000 to $90,000 annually).

    How Accessia Health Can Help

    Accessia Health has an established PIDD program to provide financial assistance for those needing help with ancillary medical expenses. 

    For more information, or to see if you qualify for assistance in any of our available programs, check out our prescreening tool and apply today. You can also call us at 1-800-366-7741.* 

    To donate to this program, click here to fill out our donation form. Make sure to designate your gift to the “PIDD Fund.”

    *Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything that you may have read in this blog, on this website, or any linked materials contained within. Thank You.

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