AERD Research Fund

"I have endured four years living with AERD - exhausting all treatments, losing everything, my job, my hopes and at times my faith. My life is about learning to accept my illness, adapt to its ever changing phases and trust that someday we will find a cure." -Julianne A. 

The purpose of this campaign is to raise funds for research on Aspirin Exacerbated Respiratory Disease (aka AERD or Samter's Triad) in order to improve treatments, help more people get diagnosed, and bring us closer to a cure. AERD affects 7 to 10% of adults with asthma, which amounts to about 1.5 million patients in the United States alone. Unfortunately, many of these people have not been diagnosed.


What is AERD?

AERD is a chronic inflammatory disease that consists of asthma, recurrent nasal polyps, and adverse reactions to MANY common NSAID medications like ibuprofen and naproxen - not only aspirin. These reactions can be severe and life threatening.  AERD usually develops in adulthood and it is currently incurable. The cause of the disease is not known. Avoiding NSAIDs does not stop it from progressing. 


Personal Message

Hello! I am Andrea Reinhardt.  Please watch the below video to learn a little bit about my journey with AERD and why raising money for AERD research is so important to the patient community. 





My own journey with this disease has been difficult, but it is absolutely not the saddest story out there. There are AERD patients who suffered for DECADES without a diagnosis. Some have had 10 or even 15 sinus surgeries. Some have tried every available treatment and continue to have unmanageable symptoms.  Many have been in the ER or even the ICU because medical professionals did not understand what was causing the problem.

Perhaps worst of all, many people with this disease have not yet been diagnosed. They are at risk of life threatening reactions, because they don't know which medications need to be avoided. The list of medications that can cause reactions is extensive. 

The Samter's Society was founded when a group of patients decided that AERD patients needed a community where they could share information and support.  We have been working together to develop resources and advocate for patients living with this disease.  If you would like to learn more about AERD or know someone who may have the disease, please visit our website, below:

The Samter's Society  
 

Our Objective

100% of the proceeds from this fund will be evenly split between the three major AERD research centers in the US. These are groups that are exclusively dedicated to researching AERD, finding better treatments, and getting more patients diagnosed. Here is some info about the research groups we are raising money for. 

Brigham & Women’s AERD Center 

The Penn Medicine AERD Center 

Scripps AERD Clinic 


 Why Research is Needed

-There is no cure for AERD and no one knows what causes it to suddenly develop.

-AERD can be difficult to diagnose. There is no blood test available. Most patients are not diagnosed until after having severe reactions.

-The treatments available are not completely effective, have significant side effects, and are difficult for many patients to access. Avoiding NSAIDs does not stop the disease from progressing.

 
Closing Statement

Please help us in our quest to raise money for research on AERD.  This is a lifelong illness that destroys quality of life and can cause acute life threatening reactions. The groups that will benefit from this fund are exclusively devoted to researching AERD, so 100% of the proceeds go directly to funding AERD research. What causes AERD? Is there a way to prevent it? Is there a way to identify patients before they have a severe reaction? Having these answers can save lives. AERD is present in 7 to 10% of adults with asthma. That is a huge number of people and many have not been diagnosed. More frighteningly – many ER doctors, hospital staff, and primary care physicians are not aware of this condition at all. No one knows how many deaths due to AERD reactions occur every year. There are many deaths recorded due to asthma or adverse drug reactions.  Some of these deaths are certainly due to AERD reactions, most likely in patients who were never diagnosed.


Messages from the Patient Community

I asked AERD patients in our support group on Facebook what they would like to say to anyone considering donating to this fund. Here’s what some of them had to say:


“Having AERD means constantly fighting to be able to breathe and smell, always being exhausted, and knowing that taking a simple NSAID accidentally could potentially kill you (among many other symptoms we face). We need research to bring back the quality of life for us. " 
– Angela W.


"After my second sinus surgery I had stomach pain and took Alka-seltzer. I experienced severe anaphylactic shock. I was admitted to the hospital and spent 3 days in the ICU. I almost died because no one knew what the problem was. I wasn’t diagnosed with AERD until 8 years after this incident." - Christine H.


“People, including many doctors, don't understand this multi-faceted disease with nasal polyps (no or little sense of smell and painful sinus headaches daily), asthma (can be very severe and life-threatening), and sensitivity to NSAIDs (no helpful anti-inflammatories for us). I may look okay, but I don't feel that way. We need research and dedicated physicians to help us improve our quality of life." – Dawn Z.

"I am one of the lucky ones. After a couple surgeries, implants, and countless medications, it only took a year and a half for my AERD diagnosis. In addition to dealing with the debilitating symptoms of AERD, the isolation is heartbreaking. My general practitioner, cardiologist, and pulmonologist were all unaware of what AERD is. Short bursts of steroids would make me feel almost normal, but as the effects would wear off and my symptoms returned the depression and isolation were unbearable. Within the medical community there is an acute lack of knowledge about AERD." -Bobby A.


“I went a long time without being diagnosed because doctors just don't know about this disease! Now that I'm diagnosed with AERD by a specialist, there is no ONE simple treatment to take care of the growths in my sinuses, constant exhaustion, sensitivity to alcohol and NSAIDs, random outbreaks of hives, and asthma. No one (not even medical professionals) knows why I have this disease or exactly how it affects my whole body. It's a very isolating feeling.”  – Michala J.


"I was diagnosed by a specialist after many years of misdiagnosis and treatments. It's extremely debilitating mentally and physically. It is usually the one thing all testing doesn't find and most doctors have no idea. So more awareness, training, research, and treatments are needed." -Eoin O.


"Have you ever had a hangover that wont go away? Ya.... try feeling like that for 10 years. And guess what...more alcohol wont help cause you're allergic to it. Welcome to Hell!!" -Eddie D.


“I have been living with AERD since I was in my early 20s. It's tough being diagnosed with a chronic disease at that age. I wondered if realizing my dreams, such as having a family, would be possible, but I was and am determined to live a full life despite my health issues. I'm grateful for the advancements that have been made in the treatment of AERD. Further research will help improve quality of life for people with AERD and I hold onto hope that one day there may be a cure.” – Kelly B.


"From the outside we look perfectly 'normal' and well. Most people don’t even suspect we suffer daily. They have no idea just how physically and emotionally debilitating AERD can be." -Rhonda N.


“To have AERD is to be a mystery. Local doctors rarely understand how to treat us. We suffer and fight severe asthma, sinus pain, congestion, and exhaustion. Taking an NSAID can land us in the hospital and be life threatening. I sat in a hospital bed the day of my C-section clutching my newborn son, gasping for breath, tears streaming down my face, while nurses and doctors buzzed around my room. None of them knew why. None of them knew it was the medicine they had given me for pain post surgery. Doctors need to have more information about this disease. It needs to not be an anomaly, which is why these institutions studying AERD are of so much importance. We need to not be mystery patients.” – Maria B.


“When I finally got diagnosed and found Dr. Cahill @ the Brigham she said, “People underestimate the quality of life factor in being unable to smell.” I promptly burst into tears. Finally someone who understood not being able to smell the rain, or freshly mowed grass or coffee or smoke or gas. Someone who listened when I described being unable to taste cinnamon or vanilla or cardamom. For someone who loved to cook this was a huge loss. Someone who was willing to help me find my way back to health and regain my sense of smell.” – Michelle B.


“The first few surgeries I just thought I was battling nasal polyps. Several years later I have a diagnosis that has a name.  It wasn't until I saw a sinus specialist that had AERD experience that looked me in the eye and told me, "No more surgeries. Too much scar tissue," and informed me my quality of life would not be good. That is when I actually realized (with tears in my eyes) my life was forever changed." – Kimberly H.


“I’m not who I was before AERD. The infinite head cold, no sense of smell, nightly asthma attacks, fall asleep ANYWHERE, fatigue, and constant aches and pains mean I have to plan for every aspect of my life. Only the bare minimum gets done some days. I’m out of sick time. And I should have bought stock in Kleenex.” –Angela R.


“There were days and nights when I couldn’t breathe. I don’t know how I survived. I didn’t know I had asthma or AERD, so I was not on any medication. I would sit quietly, try to catch my breath, and hope I wasn’t about to die. It was terribly frightening for me and for my spouse.” -Diane F.


"I had taken an occasional NSAID for years with no issues. One day I ended up in the ER with a kidney stone. They gave me a “pain cocktail” which contained ketorolac and I went into severe respiratory distress. Fortunately, since I was already in the ER, they were able to treat it. But to this day I am terrified of accidentally taking an NSAID and having another reaction. " -Beth L.


“It took me 15 years to finally be diagnosed. It's a life changing condition that still not many people (including doctors) know about. We suffer daily and one wrong action could cause us severe consequences and end up with a trip to the hospital.” – Davina  R.


There are hundreds of AERD stories like this that we could share. PLEASE HELP. Share this page with your friends, family, and co-workers.

How you can help make a difference today:

1. Make a donation to support AERD research.

2. Share our page with your networks:

https://www.gofundme.com/aerd-research-fund/



If you want to learn more about AERD, please consider listening to the below educational webinar. Dr. Laidlaw of the Brigham & Women’s AERD Center is internationally recognized as an authority on AERD.