Feeling alone living with a PI? Here are 82 people like you!

Source: Screenshot from IDF "Reel Stories"
Source: Screenshot from IDF “Reel Stories”

We told you why this year’s conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra Exciting.

Find out the IDF zebra’s new name here!

The 2015 National IDF Conference is happening in New Orleans, LA right now!  Patient Worthy is following the conference  live on twitter to stay current on the latest news and findings. [tweet id=”614465141862633473″ align=”right”]

The IDF has been encouraging those living with a primary immune deficiency (PI) to create and send them “Reel Stories”, video testimonials; about getting diagnosed, living with a PI, caring for someone living with a PI, staying positive – just videos of themselves being real and sharing their story.

Some, like Andy give tips on how to manage living with a PI, while others talk about their journey to diagnosis.   Marissa expresses her frustration with her symptoms, some of the challenges she and her family has faced learning to manage living with Hyper IGE, and how excited she was to attend this years IDF conference.

The videos can be viewed on YouTube or on the IDF site (linked above) and so far the IDF is housing 82 Reel Stories. The IDF has organized the videos too so if you are searching for a particular primary immunodeficiency disease it is super easy to find Reel Stories by disorder type (see below) or by testimonial type (to name a few): Stories – Treatment Options – Lifestage – Be Your Own Advocate – Staying Positive – Healthy Lifestyle – Volunteer

Source: Screenshot from IDF "Reel Stories"
Source: Screenshot from IDF “Reel Stories”

Chronic Granulomatous Disease
Combined Immune Deficiency
Common Variable Immune Deficiency (CVID)
Hyper IgE
Hyper IgM
IgG Subclass
Selective IgA
Specific Antibody

We haven’t met everyone yet, but encourage you to get started!

Stay tuned for our upcoming “Reel Stories” Post Series!

In the meantime, meet Mark and Jordan Leventhal, an incredibly positive and pro-active father-son duo from Ohio who live with CVID.  Together they created a short “Reel Story” for the IDF promoting education, positivism, and preparedness – Jordan is getting ready to go to college!

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