by Amanda Painter, South Chapter Coordinator
More often than we’d like to see, an anaphylaxis death is in the media. For someone with food allergies or caring for someone with food allergies, this can bring up a range of emotions. How do we process the death of someone we never met and didn’t know, yet this person has a profound impact on our lives? We remember their names, faces and stories.
As a mother of a child with food allergies and a food allergy educator, I can recite to you in detail what happened with many anaphylaxis fatalities over the past several years. But I don’t use the specifics of these stories to dwell on the thoughts of worst-case scenarios. I use them to teach others and to remind me to be vigilant with my child’s care. I encourage you to do the same with these stories.
Honor the memory of those we have lost. Don’t let their story end – use this opportunity to promote awareness and protect others.
I urge you to not let fear grow, instead grow in your preparedness. Now is a good time to focus on your daily routines and avoidance strategies. Have you become lax with something? Is there a situation that you have thought about addressing, but keep putting it off? Now is the time to speak up. Explain how to reduce risks and what is necessary to keep you or your child safe.
Ask questions. Specifically, ask productive questions that can be answered.
If you are not sure what symptoms are considered severe, talk to your doctor.
Understand the details of your Emergency Care Plan.
Know how and when to use epinephrine. Be confident. Have it on hand at all times. Always carry 2. Review with your child, friends, family, co-workers, teachers, etc. how to use it. Practice, practice, practice.
Know your risks and how to avoid them.
Love your kids. Teach them self-management. Encourage them and empower them.
Make our community stronger. Bond and make connections with others in the food allergy community. This can be via social media or those in your own town. Join a support group and find out how your local group works to raise awareness. Help your community be more allergy-aware and understand how to support those managing food allergies. You can be the person who makes a meaningful difference in someone else’s life.
Let go of the fear. Focusing on tragedies is not productive. Focus on prevention efforts and self-management. Concentrate on solutions. Put effort into controlling what you can.
Live in the present moment. Remember to live life. Don’t be paralyzed by fear. If the fear is overwhelming and you find yourself struggling, search for a healthy way to cope with it. Ask others for help. Practice self-care.
Create positive change. Find motivation in the tragedy of a precious life lost too soon. Give that life meaning and purpose.
by Amanda Painter, South Chapter Coordinator
Why do you need a support group?
There is a bit of a stigma associated with support groups. The thought of attending a meeting full of strangers can make an already anxious person feel incredibly uncomfortable. Some may question what happens behind these closed doors. Will I be put on the spot? Do I have to share? I'm not comfortable talking in front of others.
Let me give you a glimpse into what happens behind those doors and why you should join us.
You'll learn something. The topic of food allergies is ever-changing. Join us to stay up to date on research, products, trends and more. We share recommendations for restaurants, recipes, epinephrine holders, vacation spots and favorite products.
You'll make friends. And the best thing about these friends is that they "get it". No having to explain how grocery shopping is difficult or why large family potlucks stress you out. They already understand. Exhausted from staying up all night trying to make the cake perfect? They have been there and can share some tips to make it easier next time. These friendships will move beyond the meetings. You'll have play dates, send messages with recipes and share encouragement.
Meetings are a safe place. You can complain about your extended family that doesn't get it. You have the freedom to say whatever is on your mind.
We want you to talk about food allergies. Sometimes those around us may think food allergies are always our conversation topic. Sometimes we feel that we are overburdening others with our food allergy anxieties and fears. Being able to be in a room where food allergies are the discussion topic will help you direct your food allergy questions/concerns. Of course, you are also welcome to just sit and listen. Sharing is not required.
You're not alone. Food allergies are isolating. When we come together as a group, we decrease the sense of isolation. Participating in a group allows us to see and talk to others, so we know we are not completely alone.
Empower yourself to manage confidently. Learn practical management tips for how to communicate with your child's school and how to teach your child to self-manage. Increase your skill set for problem-solving and coping.
I hear from many people "I don't need a support group. We've been managing for a long time, and we're fine." Guess what? The support group needs you.
Why does the support group need you?
Do you remember that ton of bricks that hit you with your/your child's diagnosis?
Recall the confusion leaving the allergist office with a prescription for epinephrine?
Can you still feel the fear and the tears that came after grocery shopping and being scared that you will purchase something that could harm your child?
Someone else feels that way. Help them stand confidently. Reassure them that they can manage this.
Were you ever alone in this journey? Did you need someone just to listen? Be that for someone else. Make this journey a little easier for them.
Think about all of the challenges you've already faced and conquered. Someone in your local support group will encounter them soon and needs your encouragement to do so.
When you help someone else manage food allergies, you realize how far you have come.
As a support group facilitator, I get more out of these meetings than I ever thought I would. Listening and helping others continues to help me in my family's food allergy journey.
Join us for a meeting. We share our frustrations and tears. We share our successes and laughter. The most important thing is that we do it together.
We understand the challenges of managing food allergies.
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