People Video
PUBLISHED OCTOBER 15, 2024

Diane’s story: a long journey to a Primary Immunodeficiency diagnosis

#Diane

For 26 years, Diane has worked as a registered nurse, balancing her career with a series of unexplained, recurring illnesses. It wasn’t until 2019, after decades of health challenges, that she was diagnosed with Primary Immunodeficiency (PID), a rare disease that compromises the immune system. This diagnosis not only provided answers but also transformed her approach to managing her health.

From a young age, Diane was frequently ill. Multiple surgeries and recurring infections marked her childhood and continued into adulthood, leaving her constantly battling illness. She later became a nurse, only to find herself regularly sick from the very environment where she was helping others. What she didn’t know at the time was that she had virtually no immune system.

It wasn’t until she began working in the infusion industry that she learned about PID and its 10 warning signs. After realizing she exhibited 6 of those signs, Diane finally received a diagnosis and began therapy in 2019. Since then, she rarely gets sick and now has more energy than she ever imagined possible.

Today, Diane is not only a patient but also an educator, helping other healthcare providers recognize the early signs of Primary Immunodeficiency and guide patients toward diagnosis and treatment. Diane’s message is one of hope: living with PID doesn’t have to mean a life of illness. With proper treatment, there’s a future beyond the diagnosis.

“As a patient with Primary Immunodeficiency, it’s not like I woke up one morning and decided I wanted to be sick and live my life on antibiotics,” she explains. “But that’s how I lived and it was challenging because it kept me from doing the things I wanted.”

– Diane – Registered nurse, mom and PID patient

What are the 10 warning signs of Primary Immunodeficiency¹?

If you or someone you know is affected by at least of the two following warning signs, speak to a physician about the possible underlying presence of Primary Immunodeficiency.

 

  1.  Four or more ear infections in one year.
  2.  Two or more severe sinus infections within one year.
  3.  Two or more months on antibiotics with little effect.
  4.  Two or more pneumonias within a year.
  5.  Failure of an infant to gain weight or growth normally.
  6.  Recurrent deep skin or organ abscesses.
  7.  Persistent thrush in mouth or fungal infection on skin.
  8.  Need for intravenous antibiotics to clear infections.
  9.  Two or more deep-seated infections including septicemia.
  10.   Family history of Primary Immunodeficiency.

 


¹European Society for Immunodeficiencies: https://esid.org/Working-Parties/Clinical-Working-Party/Resources/10-Warning-Signs-of-PID-General

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