Support for Those Living with Adrenal Insufficiency

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One of a Kind

One of a Kind Hello! My name is Karen, this is my son Nathaniel, aka Goober-Fish, or Nate, as he now calls himself. Nate who is almost 5, is the only known person in the USA with POMC.  He has a list of health issues and Adrenal Insufficiency or “A.I.” for

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Just an Average Kid

Written by Jennifer M. I asked Lily if she wanted to write something to help others learn about Adrenal Insufficiency and she said- Like what?  I told her to just write about what she felt and what she had to do because of it.     “If

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Emergency Protocols Saved My Daughter

Emergency Protocols Saved My Daughter by Laura Adderholt Anna was born with a rare genetic condition that causes her to be adrenal insufficient, she also has Skeletal Dysplasia and Perthes Disease of the right hip.  This bone disease causes the ball joint to die and she lives with

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The Beauty of Community

Reposted from the blog of Amber  “Living with Addison’s Disease“ I write about my life with Addison’s Disease yet until yesterday I had never met another person with the same disease. I communicate regularly online through things like this blog or online support groups, but to share

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The Journey We Never Saw Coming

This post was first featured on Baby’s First Test, visit their website for more information about newborn screening. Posted: April 15, 2013 at 5:35pm by Allie Kelly Kohen looking as cute as ever thanks to newborn screening! On April 22, 2012, I gave birth to my sweet

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Get Here Now, She’s Dying!

Written by Jenny W. On a Sunday morning in May 2007 my husband and I went to check on our 18 month old daughter. We were surprised that she had not come into our room to snuggle like she had done every Sunday before. When we walked

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Harmony 4 Hope

Harmony 4 Hope SM is a Chicago based non-profit foundation. Our unique mission is to use repurposed technology and live music to comfort, create community and contribute to rare disease research and awareness among community youth and the general public. On World Rare Disease Day, 2014 Harmony 4

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Signs and Symptoms Survey Results

Study Participants Adrenal Insufficiency United (AIU) conducted a study to compare the symptoms and life experiences of those affected with Adrenal Insufficiency (AI) to with those without AI.  Data was collected using Survey Monkey.  Participants were found, in both the control and affected group, through Facebook. The

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Gabe’s Birthday in the Hospital

By Cheryl Kornegay Gabriel had never had a real birthday party before. For the past nine years, we had small gatherings with grandparents, aunts, and uncles, but had just never managed to have a big party with all of his friends. This year was special. This year

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Flying High: The diagnosis

The Diagnosis 30,000 feet in the air. I am barely conscious but the anxious feeling took over any other fear and emotion I may have had. I packed and slept and slept for the two hours to the airport. My mind was numb and my body just

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We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

Recent News and Events

  • What Constitutes an Emergency
    What Constitutes an Emergency
    October 12, 2017 by
    by Sarah Reilley   Read more from her blog @ Spoons and Adrenals As we all know, adrenal crisis is a life or death situation.  Without immediate, proper care, there’s a very small window to correct the crisis before coma, brain damage, and death occur.  Not every emergency...
    Read more
  • Conference on Adrenal Insufficiency
    Conference on Adrenal Insufficiency
    October 1, 2017 by
    Registration for AIU’s first ever conference devoted to adrenal insufficiency is now open! We are thrilled to open registration for our March 23-25 conference held in Kansas City, MO.      With an amazing line up of professionals addressing a wide range of topics this conference is not to...
    Read more

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