Breathing Through Adversity: My Journey with AERD

By Rhonda Nelson

3 min read

Navigating the challenges of Aspirin-Exacerbated Respiratory Disease (AERD) has been a transformative journey for me. From the initial shock of diagnosis to becoming an advocate for awareness and understanding, my story is one of resilience and empowerment. Each step along the way has brought new insights into living with AERD, shedding light on the complexities of this somewhat rare condition and the strength it takes to manage it daily.

Navigating life with AERD

Living with AERD is not just about managing symptoms; it's about adapting to a new reality. The daily routine is shaped by careful avoidance of triggers, including common medications like aspirin and certain foods that contain salicylates. Even a simple meal or over-the-counter pain reliever can become a source of anxiety. Despite these challenges, I have learned to navigate life with a heightened awareness, developing strategies to maintain my health and well-being. This journey has also highlighted the importance of support systems, from understanding healthcare providers to a community of others living with AERD.

Coping with an AERD diagnosis

In 2002, I was diagnosed with AERD, a condition that was relatively unknown and often misdiagnosed at the time. The diagnosis marked the beginning of a long and challenging journey, as I sought to understand and control a condition that few people, including many healthcare providers, fully understood.

Coping with AERD involves medical management, lifestyle adjustments, and emotional support. Working closely with knowledgeable healthcare providers has been crucial. Regular consultations with specialists familiar with AERD have helped me develop a personalized treatment plan, including medications like leukotriene inhibitors, biologics, and corticosteroids, along with exploring options like aspirin desensitization therapy. Managing triggers has also become second nature—learning to identify and avoid common triggers, such as aspirin, NSAIDs, and foods high in salicylates, is essential to my daily life.

Taking care of my mind and body

Staying informed about new treatments and management strategies has empowered me to take control of my condition. Through support groups and online communities, I've connected with others facing similar challenges, sharing experiences and learning from one another.

Practicing self-care has also been a cornerstone of my journey. Incorporating stress-reducing activities like yoga and meditation, along with unconventional therapies such as supplements, infrared sauna therapy, red light therapy, cupping, and acupuncture has proven to be beneficial in managing my disease. Building a strong support network of friends, family, and fellow AERD warriors has provided the emotional support necessary to navigate the ups and downs of living with a chronic condition.

Lifestyle changes to manage AERD

Diet plays a critical role in managing AERD, and I’ve had to make significant adjustments to avoid foods that could trigger my symptoms. Identifying and avoiding high-salicylate foods has been key, and I’ve learned to focus on low-salicylate options. Cooking at home gives me control over ingredients, helping me avoid potential triggers hidden in processed foods. By keeping a detailed food diary and working with a dietitian, I’ve been able to maintain a balanced diet while managing my symptoms.

Adapting my lifestyle has also been necessary to manage AERD effectively. Creating an allergen-free environment, practicing nasal hygiene, and developing a stress-reduction routine have all contributed to improving my quality of life. Communicating openly with my healthcare providers and being flexible in my daily routines have helped me stay on top of my condition.

Overcoming the challenges of AERD

For patients and caregivers navigating the complexities of AERD, accessing the right resources can make a significant difference. Organizations such as the Allergy Asthma Network, My AERD Care, Samter's Society, various AERD Facebook Groups, and the AERD Research and Support Foundation offer invaluable support and information. These groups provide a wealth of resources, from educational materials and patient forums to expert care recommendations, all designed to assist those affected by AERD in managing the condition more effectively and fostering a supportive community to share experiences and strategies.

Despite the challenges of AERD, I’ve come to embrace the journey as one of growth and empowerment. Living with AERD requires resilience, adaptability, and a commitment to self-care, but I’ve learned that I am stronger than I ever imagined. My story is not just about managing a chronic condition, but about finding hope, strength, and a sense of purpose in the face of adversity.

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Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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CommunityMemberca3e0a Member
I also have AERD although here in Canada my Respirologist just calls it the Samter's Triad but it's the same thing. Mine started suddenly when I was in my mid 30's. I had never had Asthma up till then. I remember developing a stuffy nose, then I developed Bronchitis and was sick for about a month. One night I suddenly could not breath and was gasping for breath. Luckily at that time I was still living in the UK and our doctor was still doing house calls (this was the late 1970's). My husband called him and he came within a short period, and after examining me he asked if I had ever had Asthma which I hadn't at that point! He prescribed Prednisone which worked very fast, and a couple of weeks later I was fine with no symptoms. However a few months later the same thing happened and when the Doctor this time asked if I had taken anything before the onset of the breathlessness, and I told him I had taken Aspirin for a headache. Again he prescribed Prednisone. Fast forward a couple of months and it all happened again.....this time when I said I had taken Aspirin the Doctor began to realise what was happening and he sent me to a Respirologist and I was diagnosed with AERD!! I have never touched Aspirin since then, or any medicine associated with Salycilates. Every drug that is prescribed to me I read all the information on it. Four years ago I had a heart attack and it was recommended that I have a Bypass Surgery. However the heart surgeon was concearned about the Asthma and AERD situation. They thought of trying to wean me off (or on?) to Aspirin as apparently they prefer to use Aspirin as the main blood thinner after a Bypass Surgery. However after a few blood tests and much discussion it was decided that instead of risking using Aspirin they would put in Stents instead. So four years later and everything is fine and my Asthma is under control. I do take blood thinners, but not Aspirin! 
1. Rebecca C Moderator & Contributor
 <inline-mention username="CommunityMemberca3e0a" user-id="8889716"/> Such good news. I am glad you are feeling better currently. How scary, tho! I'm sorry to hear you had a heart attack. Not being able to utilize aspirin is tough. But seeing it is a huge asthma trigger, you seem to understand it's best to keep away. I'm happy to hear that stents were placed and surgery was effective. Sometimes you have to go off the beaten path and find another way to help. The stents seem to have been chosen in a great and very effective way to quickly improve your health. Thanks so much for sharing your health struggle and how you managed to improve your life. Wishing you only the best - Thoughtfully, Rebecca (team member)
Libra2684 Member
I can't take aspirin or salicylate products but can take other NSAID & this was figure out yrs ago before I was diagnosed with asthma. 
1. Libra2684 Member
 <inline-mention username="Rebecca C" user-id="3003427"/> everytime I told it my stomach would hurt with & without food so my mother told my Dr & he suggested try another form of NSAID I was in my early teens at the time. I was never diagnosis with AERD but when I got older I asked my Dr again & she said it could be the DNA of the meds makeup that could've been the issue. I've aspirin as an allergic reaction to be safe since 2010
2. Rebecca C Moderator & Contributor
 <inline-mention username="Libra2684" user-id="4660125"/> I understand as I have sulfa and other medication allergies since a young age and am quite vigilent about not taking them. It's important to remember each med as they can be prescribed quite often. It seems over the years my list has grown. I have MCAS as well as asthma and other chronic illnesses, so managing is critical. Thanks for sharing a view into your health journey. Sending well being your way. Rebecca (team member)