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Posted on 4. April 2013

Get the Word Out

by Annaben Kazemi

April is Primary Immunodeficiency Awareness Month! 

This cause is near and dear to my heart, as I have a daughter who is diagnosed with primary immunodeficiency disease (PIDD). Having struggled with misdiagnosis, misperceptions and unhelpful, though well-intended, advice, I know how important it is to raise awareness and understanding about these diseases — both in our own communities and throughout the medical community.

More than 185 various PIDDs have now been identified. While every patient’s journey is unique, and each caregiver’s situation is different, we are bound together by the commonality of our struggles with a chronic, invisible and rare condition. We all want others to understand what we go through with this relentless unseen disease.

An awareness month is a perfect opportunity to educate and inform people about PIDD and, it is hoped this awareness will lead to others getting an early diagnosis and earlier treatment. The average time between the onset of symptoms and diagnosis is seven to nine years. Yet, the earlier a PIDD is detected and treated, the more likely long-term irreversible damage can be avoided. Although my daughter was diagnosed as an infant, we had a long hard battle until she began treatment with intravenous immune globulin (IVIG) in elementary school. Starting IVIG was life-altering for her, and we often wished it could have happened sooner.

This month, let’s stand together and celebrate Primary Immunodeficiency Disease Awareness Month by educating others. April is a great time to take action in your community. Below is a list of ways you can help advocate for PIDD awareness that my daughter and I came up with:

  • Get the word out by making a display board like the ones used for science fair projects. Students and parents can make a presentation in a classroom, in the teachers’ lounge, the staff room, a pediatric office or a local daycare.
  • Post materials/flyers at hospitals, health fairs, libraries, plasma centers, churches or other community gathering spots.
  • Use social media to spread the message. Post, tweet, pin or Instagram about Primary Immunodeficiency Awareness Month throughout April.
  • Share your own personal experience with PIDD with your local news media; stories about real people are interesting. Use your story as a catalyst to educate and inform others.
  • Hold a fundraiser (bake sale, lemonade stand, car wash, Blue Jeans for Healthy Genes Day, homemade bracelets or any other creative idea!) to raise money for research and to bring about awareness.

There are so many other creative and inspirational ways to get the word out about PIDD. Tell us about your activities and successes with promoting awareness, and remember that your efforts might change a life!

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Comments (2) -

Sue
10:56 AM on Friday, April 05, 2013

I share your enthusiasm with regard to spreading the word about PIDD.
I have shared on social networking sites, etc, and I find that the majority of people are not interested and actually have commented in a not so nice way. If they are people that have first hand experience with a chronic illness they will read the information, and be supportive.
I have taken the IG living magazine to the infusion room at the hospital where I receive infusions, only to be laughed at by the staff.  The comment was "IG living? Do you live your life for IG?"
I wonder about how many others have heard comments such as these?
I would like to share some of this information on social networking sites however I don't know if I want people that say they are my friends to see it.
Any comments out there?

Kari Pelletier
5:17 AM on Saturday, April 06, 2013

I also have not always gotten a warm welcome when I discuss PIDD.  The worst was when I went to supposedly immunologists here in Wisconsin.  The Dr.'s were not interested in keeping my children on IVIG.  They wanted to take them off of it, after I had been struggling with years of getting a diagnosis and my kids were doing somewhat better the last thing I wanted to do was take them off of something that was helping.
Immunologists need to understand that usually once your on IVIG you stay on it because that is whats keeping you healthy.  I feel your frustration.

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