Information Is Power

Information is Power

By Jen, from Unique But Not Alone

Well here I am, Jen, your guest blogger in October, and this is my last post for the month. Thanks so much for welcoming me here at 5 Minutes for Special Needs. It feels like home.

When my oldest daughter, Grace, was diagnosed with Alpha-1 Antitrypsin Deficiency, there was little information available about children with Alpha-1. Grace’s gastroenterologist gave us information, but there were no brochures…just research articles. I scoured the Internet but could only find stories of children who needed liver transplants or stories of children who had passed away. I remember feeling like I was swimming in the unknown scary world of medical jargon combined with loads of fear for my precious baby.

So there I was…fearful for Grace, with little information to calm my fears. Anxiety and depression were overtaking me, and it felt like I was drowning in uncharted waters. Thankfully, time and perspective showed me that Grace’s liver was slowly getting better, and that I needed to appreciate life from day to day.

Six years later, I’m armed with information and resources. I now know that an estimated 1 in 2,500 births accounts for a child with Alpha-1, which surprised me. I had never heard of Alpha-1 when Grace was diagnosed. Now it is an everyday part of my persona, and I’ve got so much to share in a “pay it forward” kind of way.

Here are a few non-profit organizations associated with Alpha-1:

The Alpha-1 Association (http://www.alpha1.org) is a member-based organization dedicated to support, education, and advocacy. It provides a nationwide support group network, patient hotline (1-800-245-6809), genetic counseling center, peer guide program, and community discussion forum.

The Alpha-1 Foundation (http://www.alphaone.org) is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. This is the foundation searching for a cure.

All-in-all, I now know that my daughters and I are unique, but not alone in the world of Alpha-1. Thanks for getting to know us.

Jen, Grace, and Meghan
Unique But Not Alone (http://alphagirls.blogspot.com)