Join Together for Better Care

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Today is Rare Disease Day, an international event that calls attention to diseases that affect less than 200,000 Americans.  FPIES is one of 6000 rare diseases.  The day is an opportunity for people who usually feel so isolated in their diagnoses to come together and recognize that they are part of a larger community.  It is also about sharing our stories and raising awareness to encourage research and understanding of the diseases and those that live with them.  The video below, that was put together by The National Organization for Rare Disorders (NORD), does a great job of explaining rare diseases and the goals of the day.

<iframe width=”560″ height=”315″ src=”//www.youtube.com/embed/NEIkpt4Gkzo” frameborder=”0″ allowfullscreen>

NORD has also organized the Handprints Across America campaign, a space for individuals with rare diseases to share their stories.

Handprints Across America

The best we could do for our Handprints Across American Entry

To be honest, before this year I had never heard of Rare Disease Day and I certainly hadn’t heard of some of the diseases represented.  The FPIES Foundation  and IAFFPE has been publicizing the event and encouraging participation in Handprints Across America.  I was so excited to have a chance to participate in a movement to increase awareness of FPIES and other diseases about which little is known.  I went to the website to print out our flyer and immediately became engrossed in the photos and stories that were already posted.  What a humbling experience. I was suddenly so grateful that E only has FPIES.  I mean, FPIES sucks but there are people (and families) suffering far worse.  It is days like today that remind me to count my blessings and be grateful that these are our biggest problems.

In honor of Rare Disease Day, I finally created an information page about FPIES that I would love for you to visit to learn more about food allergies and FPIES.  But I plan to share information about FPIES with you frequently and will continue to add to the information page.  So today, on Rare Disease Day, I urge you to take a couple of minutes to check out the stories of the other brave patients and their families.  Look into their eyes, allow yourself to connect with them and their struggles, learn about one of the rare diseases, and share what you learn with someone else.   As a caregiver of someone with a rare disease, I want you to know that we appreciate whatever it is you do (and just reading this post counts).  

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On a lighter note, below are some out-takes from our Handprints Across America photo shoot. I admit that we shouldn’t have waited to minutes before bedtime on the day before Rare Disease Day to take our picture, but E is definitely going to have to get better at supporting mommy’s procrastination habit.

photo 1 photo 5 photo 1 photo 3 photo 5photo 4photo 2 photo 3

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