April is Primary Immunodeficiency awareness month. What does that really mean for us Zebras? It means we can educate our family and friends about the reason we missed ( fill in the blank), or felt too crummy to (fill in the blank again).  We also have the opportunity to let them know we are not alone – there are many Zebras.

When I was first diagnosed- there were about 50 PI’s. I remember thinking – WOW- that’s quite a few-  especially since I had never heard anything about this disease. According to the IDF – now over 350 types of PI have been identified.

This is from the IDF site:

“Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. While not contagious, these diseases are caused by hereditary or genetic defects, and, although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender. Some affect a single part of the immune system; others may affect one or more components of the system. And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body’s normal immune system.

Because one of the most important functions of the normal immune system is to protect us against infection, patients with PI commonly have an increased susceptibility to infection. The infections may be in the skin, the sinuses, the throat, the ears, the lungs, the brain or spinal cord, or in the urinary or intestinal tracts, and the increased vulnerability to infection may include repeated infections, infections that won’t clear up or unusually severe infections. People with PI live their entire lives more susceptible to infections–enduring recurrent health problems and often developing serious and debilitating illnesses. Fortunately, with proper medical care, many patients live full and independent lives”.

I know that I’ve lived a very full life- and I thank my medical team, my family and my stubbornness for that.

For this special month – I would like to profile other Zebras on this blog. 

If you are a patient or a caregiver – please contact me so that I can profile you in the month of April for Zebra awareness. Please know that I will respect any confidentiality. This month is all about YOU.

You can reach me on Facebook with a PM, a comment under this blog- or email me at ckmiletti@icloud.com.

Looking forward to hearing from you

later

C

 

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