The Samter's Society

About The Samter's Society

The Samter's Society is a patient-run disease advocacy group. We are dedicated to raising awareness of AERD and helping patients find the resources they need to manage the disease. We have a partnership with Allergy & Asthma Network, a non-profit organization that advocates for allergy and asthma related diseases. We work with doctors who specialize in Aspirin Exacerbated Respiratory Disease to develop new resources for patients.

The information on this website is not designed to replace medical advice from your doctor or advocate for any specific treatment approach. 

 

If you have a question or comment about the website, email info@samterssociety.org.

If you want to connect with other patients, please visit the Facebook Samter's Society Support Group. In the support group, you can communicate with thousands of other patients from all over the world.

Below you will find some information about the patients who have been most instrumental in making The Samter's Society a reality.  

Andrea Reinhardt 

Administrator - Samter's Society Website and Support Group

I developed AERD in my early 30s. I saw many doctors, tried many unsuccessful treatments, and at one point was certain that I would never feel well again. Like most AERD patients, I lived for several years feeling like I had a "mystery disease" that none of my doctors knew anything about or how to treat. If you want to know what it's like living with AERD - imagine having the worst cold you've ever had, but it never goes away, and then throw asthma and severe reactions to things on top of that.

I have had a difficult journey with this disease. I am feeling a lot better with my current treatments, but AERD continues to have a significant impact on my life. I started The Samter's Society because I wanted to make a difference in the lives of other patients. It is difficult for patients to get accurate information and find doctors who know how to treat the disease (or have even heard of it). I wanted to do something to give back to the AERD patient community, because without that community I would not be feeling as well as I am today.

 

We have come a long way from where we were just a few years ago. We have a formal partnership with Allergy & Asthma Network and an excellent relationship with experts on this disease. Doctors from Brigham & Women's, Scripps, and the Penn Medicine AERD Center have contributed to our efforts by providing lists of doctors, informational handouts, and other important resources. Working together, this patient group can do much to raise awareness of AERD and help patients find the resources they need to manage it more effectively.

Eddie Del Rio

My name is Eddie Del Rio. I'm a 34 year old engineer residing in San Diego. I grew up with asthma, allergies and a condition called Pectus Excavatum. I was first diagnosed with AERD in 2007. I have had multiple surgeries and received much incorrect and confusing medical misinformation for many years. I suffered with this disease from nasal polyps, no sense of smell, allergies, low energy, fatigue, constant sleepiness. All of my symptoms seemed to be getting worse throughout the years. I knew I had to do something. I was literally sick and tired of having to live like this. My symptoms seemed to be getting worse, especially the fatigue and lack of concentration. I started researching more and more about the disease and following the available support forums more closely. I came across a medical conference presentation on YouTube from AERD expert Dr. Tanya Laidlaw and began to understand the science and realized that I was the "perfect candidate" for aspirin desensitization. I googled more information and came across Dr. Andrew White's Scripps Clinic page. 

 

I was finally desensitized in 2016, 9 years after being diagnosed with AERD. Dr. White also prescribed additional medication that made a significant difference, as well advising all my other doctors on the proper protocol. There are really only a handful of doctors who truly understand the disease and can properly treat it. But that doesn't have to be the case. Aspirin desensitization, along with the other treatments, helped me feel much better and so far my polyps have not grown back. I still lack sense of smell most of the time, but I can breathe through my nose, which makes exercise, sleep, and life in general so much easier. I still struggle with fatigue and lack of concentration. Pinpointing exactly what makes things better or worse makes things challenging.

   

I later realized that I didn't even have it that bad - my symptoms were minimal compared to what I was reading in the support groups and the amount of misinformation in some of those groups was staggering. I felt like I needed to help my AERD community and reached out to Dr. White for help. He referenced the Allergy and Asthma Network and thus began The Samter's Society. Hopefully we can continue to provide more support, outreach, awareness, and research. I have a personal interest in developing and designing medical products to assist in diagnosing, testing and tracking symptoms and progress. Everything is still in the early stages, but I am excited more the future.

Rachel Scott

My name is Rachel and I developed adult onset asthma and sinus polyps at 19, had my first sinus surgery by 20, and developed full blown AERD just two months shy of my 30th birthday. I saw doctors for years without a diagnosis, and felt alone for a long time trying to figure out why I was always getting sick. My goal is for AERD to have more awareness so that when a patient sees a doctor with these problems, the diagnosis doesn’t take years. I also want ER doctors and those in medical settings to be familiar with AERD so we are not always explaining what it is to every new medical person we see. The Samter’s Society is a great place for talking and learning with other AERD sufferers and a fantastic support group.

   

Kaycee​ Castleman

My torrid history with this disease isn’t as long as others but nonetheless it’s impacted my adulthood. I was diagnosed officially with AERD in 2012 but had been dealing with it undiagnosed for years prior. I’m currently in my late twenties but at a tender age of 17 I first developed my reaction to aspirin without knowing what was happening. I self medicated and just avoided NSAIDs after that. Next came my asthma a year later and another following year was the nasal polyps. 

Doctor after doctor kept treating each individual symptom on their own. After my 3rd nasal surgery (of now 5), was when they finally pieced it all together in an official diagnosis. It’s been trial and error ever since we actually approached the disease for what it is. It was slow going until I discovered Samter’s Society. Being able to communicate with fellow patients as well as being able to easily find the most recent research has improved my quality of life. I have been able to discuss with my doctors and get a better treatment plan for myself thanks to which my quality of life has improved dramatically.

This disease is just not known about enough so many doctors unfortunately misdiagnose it unintentionally. Being able to find these research papers, and sometimes even hearing from the researching doctors themselves, has helped educate ourselves and our doctors. I’m not the only one who has gone undiagnosed for some time and I won’t be the last. We can only hope that our site and community can help other sufferers, as well as doctors, so people won't have to suffer and can get the treatment they need!

   

Marla Porter

In 2015, after 10 years of multiple presenting symptoms, I was diagnosed with a disease called AERD, also known as Samter’s Triad. This chronic respiratory condition consists of asthma, recurrent sinus disease with aggressive polyps, and a severe reaction to aspirin/anti-inflammatory drugs (NSAIDs/Cox-1 inhibitors). It is estimated that about 10% of all adult asthmatics belong to this severe subgroup of asthma.

Some of the other symptoms and/or side effects I have experienced with AERD include immune dysregulation, chronic sinusitis and infections, loss of smell and taste, eosinophilia, weight loss/gain, hair loss, eustachian tube dysfunction, gastrointestinal reflux, migraines, allergic reactions, acute urticaria, sensitivity to certain foods, intolerance to alcohol, anxiety, joint aches, disrupted sleep, lethargy, and depression. Managing this disease often requires multiple sinus surgeries with painful recoveries, aspirin desensitization therapy, daily use of steroid nasal rinses, steroid inhalers, nebulizers, and oral steroid therapy. The cost of treating my AERD over the last 2.5 years has been approximately $156k. Without affordable health insurance, I am certain I wouldn’t be alive today. 

In spite of my frequent health setbacks, I try my best to remain grateful for my blessings and live a semi-productive life. This year I am checking off some places on my travel bucket list and will continue my work as a studio photographer and private ashtanga yoga teacher.
   

Kelly Beaton

Canadian Branch Leader

When I was 19 I suddenly developed asthma and began to have constant sinus pain and congestion. Over the next few years I tried a variety of medications as well as allergy shots but my symptoms didn’t improve. One day I took an ibuprofen pill and had a terrible reaction that lasted for hours – sneezing, eyes watering, nose running, wheezing. I mentioned it to a friend who was attending medical school, who said that it sounded like Samter’s Triad. When I discussed it with my family doctor, he referred me to an Ear, Nose and Throat Specialist. The ENT confirmed that I had nasal polyps and diagnosed me as having Samter’s Triad or Aspirin-Exacerbated Respiratory Disesase (asthma + nasal polyps + sensitivity to NSAIDs). I was told I would need to have sinus surgery and that the polyps would likely recur. Over time my symptoms worsened. I began to react to alcohol in the same way as I had to ibuprofen. This was a big social challenge since I was a single woman in my 20s. I had frequent sinus infections and lost my sense of smell and taste completely. I eventually consented to surgery and have had four surgeries since then. Between surgeries I enjoyed periods of good health, followed each time by a quick decline. At one point I wondered whether anyone would want to spend their life with someone so sick but thankfully my husband and I started dating during a well period and we now have two children. The most effective treatment for me was being desensitized to aspirin so I could take it daily to treat inflammation. I stopped this therapy when I began efforts to conceive my children. My health has been fairly good through my pregnancies and nursing, but the polyps are now back.

 

Advancements have been made in the field of AERD research during the 20 years since I was diagnosed. Aspirin therapy remains one of the most effective treatments and I will be having my fifth sinus surgery in April 2018, followed by a second aspirin desensitization. There are some promising new treatments on the horizon, including biologic medications that are currently being researched at AERD centers in the United States. We need to ensure that this research is funded! When I was first diagnosed I could not find any information about this disease. Now there are patient resources and support groups to help people learn how to cope. For the first time, the future is looking brighter and there is hope for a cure.

Meghan Kirby

Hi, I’m Meghan. I started struggling with chronic sinus infections and severe nasal congestion in 2006, my freshman year of college. It was around that time that my asthma worsened and I started carrying a rescue inhaler with me at all times. My sense of smell was completely gone and I was admittedly addicted to Afrin nasal spray. I kept a bottle everywhere –I couldn’t breathe without it. I struggled to sleep and felt like I was living with an illness that nobody could diagnose. After 5 years of chronic fatigue, facial pain, fevers, and difficult breathing, I decided to have a CT scan of my sinuses, which showed severe sinus disease in all cavities and a large number of nasal polyps. I had endoscopic sinus surgery in 2013 and was ecstatic thinking I’d start to feel normal. Unfortunately, my problems returned and I had my second surgery only 8 months later. During this time, I was taking copious amounts of ibuprofen to treat the headaches and facial pain that come with sinus issues. I visited my primary care doctor multiple times with complaints of severe rashes on my face, hands, chest, and feet. I was tested for everything under the sun, from Lyme Disease to Lupus to Fifth Disease. All tests came back negative. I was using my inhaler almost daily, but chalked it up to environmental allergies. What I didn’t know was the regular use of ibuprofen was causing a plethora of dangerous symptoms and left me at risk for a full blown anaphylactic reaction. My Ear, Nose, and Throat surgeon tested the eosinophil count in my sinus tissue after my third surgery and found that it was alarmingly high. His diagnosis was one I had never heard of before – Samter’s Triad, or AERD. I’m now under the care of a tremendously talented and knowledgeable immunologist. My goal is to help educate physicians, especially those in emergency care, on AERD so that patients can receive safe care in critical settings. I’m thankful for the Samter’s Society for connecting me with so many valuable resources!

Heather Schroedter

My name is Heather. I am 42 yrs old and I have suffered with this disease for over a decade. I was only diagnosed in the last five years after many hospitalizations, several stays in the ICU, and far too many severe reactions. Finding Samter’s Society has literally changed my life. I was finally able to locate a knowledgeable specialist team that agreed to collaborate on a treatment plan. I have also found a real community, people that relate to the daily struggles this disease brings. My goal, our goal... awareness for AERD, is forefront, especially now that my own health is controlled. It is so important we ensure patients and physicians are armed with the information needed to diagnose and treat AERD patients. My goal is that no one with this disease feels alone in their illness anymore.

James Lee

United Kingdom Branch Leader

My name is James and I’m based in the UK. I was diagnosed with Samter’s Triad in 2016 after 2 years of symptoms which started as chronic rhinosinusitis with nasal polyps, then progressing to asthma during exercise. Although I was diagnosed with this disease by my ENT prior to my first nasal surgery, I didn’t know I had NSAID intolerance until I took Ibuprofen at the end of 2018 and had a reaction. In April 2019, I began aspirin desensitization and I am now maintained on a combination of inhalers, aspirin. intranasal steroids, and the low omega-6 diet. When symptoms are bad for me, what affects me most is loss of sense of smell and taste, which has a major impact on my happiness. I consider myself lucky as there are many people with the disease that suffer considerably more than I do. The Samter’s Society not only offers a platform to disseminate vital information about the condition, but also as a support network and opportunity to get advice from others who share the same issues. Please feel free to contact me through the group if you want advice about your options in the UK based on my experiences. I am in communication with NICE about contributing to the approvals process for drugs that currently aren’t available for patients in England. I am a keen advocate of keeping healthy through diet, exercise and mental well-being. I encourage everyone to incorporate these things into their lives as best as possible.