Monday, May 14, 2018

Awareness- Not Just a Hashtag

How do you share your thoughts on allergies and asthma?


May is the month to stretch your wings and reach out to those who may not understand that life is so very precious. Some may not understand that one moment can change a life forever. Some may think that waiting to use a medication will not make a difference. Some may not know that everywhere, people are dying because the proper knowledge was not given to them. Each of us is different and each of us finds a way to reach out with our own voice. Making your allergy voice heard can be anything- a tweet, an article, attending an event or even distributing information that will help others understand the importance of being vigilant for safety's sake. There is no such thing as too large or too small- the important thing is to find a way and do it.


This May, I was invited to attend the Asthma Bloggers Summit hosted by the Allergy & Asthma Network. This summit was an amazing day that compiled food allergy and asthma bloggers mixed with representatives from AstraZenecaThe Chest FoundationRegeneronSanofi and Allergy & Asthma Network (of course). With a laid back discussion, the day included the introduction of new resources available through the Allergy & Asthma Network, a Q&A on social media pointers  but more importantly our thoughts, opinions and personal accounts were included in the discussions. I felt that capturing each person's different experiences makes for a well-rounded, upfront discussion and brainstorming session that fuels nothing but the overwhelming need to help even more. Don't get me wrong, it's ok to be told things but when you are asked light bulbs go off, people begin to scribble and you can feel the increased advocacy in the room. Sharing within a no judgment zone is an amazing feeling. The empowerment that was held inside that room is an incredible energy that sent me back home pumped up and full of I can conquer the world ambition.

I Mentioned New Resources I am all about sharing new resources- the more we have at our fingertips, the more all of us can learn from each other and teach others. The Allergy & Asthma Network brought us up to speed about three great places that we can go to for asthma.
                         

  • Asthma: Take Action. Take Control A partnership with The Chest Foundation, this site shares info graphs, patient testimonials, an asthma control quiz, asthma severity assessment tool, downloadable fact sheets and a postcard size info card that you can share with others.
  • Be the Boss of Your Asthma If you ever needed to know or share facts about your asthma, this is another place to get what you need. Downloadable fact sheet, doctor visit checklist, Severe Eosinophilic Asthma (S.E.A.) information and guide to managing symptoms of S.E.A. accompanied by videos with leading asthma doctors helps you get a step up on your life with asthma.
  • E-Asthma Bunches of information on how to check if your asthma could be Eosinophilic asthma (a type of severe asthma) which can increase inflammation in the lungs. The site's "What? Who? How?" approach consists of a short video describing how eosinophils effect the lungs, what and who you should do and see for a diagnosis, a doctor's checklist and lung questionnaire to better the understanding of your diagnosis with your doctor.
With so many difficulties between trying to correctly describe your symptoms to a doctor mixed with the fear that sometimes accompanies a physician visit, all of these can be used alone or together to get you ready and proactive for your health.


Kortney of AllergyGirlEats
Yup, I Admittedly Fangirled I describe food allergy support as "a vast, never-ending place where people from all over the world meet. This is a family that you never knew existed and that you didn't think would ever be a part of your life". Am I the only one who feels this way? I am amazed every single day by the support that our community gives to each other while asking for nothing in return. So when I started to look over the other name tags of who else was going to be at the Summit, I did geek out just a little bit. Summits where you finally get to meet another blogger that you have known virtually for years is like running into a rock star in the food allergy world. These people that you correspond with, that you ask advice from and share your life with are finally there, in front of you and you can have a conversation beyond your computer screen. Call me a geek, I will proudly own it. (I may or may not have silently stalked Kortney, waiting to see her reaction.) To view all of my Summit photos, click here.

Drushane TeeHee
But It Gets Even Better This summit was followed by the yearly Allergy & Asthma Day Capitol Hill. What does this mean? Attendees heard some pretty powerful testimonials before we were offered tips and highlights of what we could discuss with our state's Congressional leaders. We heard from Luca Ingrassia- a 10 year old boy who suffered an anaphylactic reaction on an airplane. This brave boy's most moving statement was "If a 10 year old knows the risks, an airline should." We also heard from Drushane TeeHee, the mother who's spreading awareness on the side effects of Singulair (montelukast sodium) which caused her son to take his own life. Although the side effects may not happen to everyone that take it, I urge you to read this article, be very aware and share with others. Drushane's story left many of us, including myself, teary-eyed but so very grateful that she was brave enough to share her son's story to help others.

Then We Hit the Pavement Yes, we all went to Congress and spoke to our state's representatives. I have never been so excited, afraid, tired, exhilarated and proud all in the same day. The topics that all of us fought to urge Congress to support and pass included access to care, step therapy, disease managementmedication access, telemedicine, affordable medications and treatments, asthma and allergy program funding, health equality, food product labeling, cross-contact and USP797. Amidst the maze of Washington, D.C. were hopeful hearts, voices that were sharing concern and personal stories of themselves and others to let Congress understand how important our causes are to us and everyone else in our community and beyond. I proudly sported my red sneakers in support of the Debbs family which also proves that you can be a voice even without saying a word.

I want to thank the Allergy & Asthma Network for including me at this wonderful experience with so many other amazing people in addition to their sponsors that made this possible. This little blogger girl from North Carolina felt amazed at all of the people who supported each other but also I amazed myself by being a part of all of this when I never would have seen myself doing this. I am filled with even more hope than before, I have gained new food allergy family members and most of all, I find myself asking "What do I do now?" If I had an answer, that would be the end of my story and I refuse to stop where I am.

Allie Bahn, Gary Fitgerald & Marcela Gieminiani

Summit attendees included Allie BahnEmma Amoscato, Kortney Kwong Hing, Henry Ehrlich, Jennifer Roberge, Kerri MacKay, Erin Malawar and Andrea Jensen.




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