ABOUT US
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ABOUT OUR WEBSITE
This website was started to educate and raise awareness about ADULT EGIDs (Eosinophilic Gastrointestinal Diseases). Most adults have found it extremely difficult to find adequate information, both on their own and from medical professionals. It is our desire to be able to acquire and share knowledge with other adults with these horrible diseases.
We also want this website to be a resource for family, friends and medical professionals who are interested in learning about our symptoms, concerns and daily battles. It seems that opinions about our struggles are based on the limited amount of information available and not our common symptoms, complaints and other medical issues. The information we supply will be based on relevant articles, journals and our own perspectives.
This website was started to educate and raise awareness about ADULT EGIDs (Eosinophilic Gastrointestinal Diseases). Most adults have found it extremely difficult to find adequate information, both on their own and from medical professionals. It is our desire to be able to acquire and share knowledge with other adults with these horrible diseases.
We also want this website to be a resource for family, friends and medical professionals who are interested in learning about our symptoms, concerns and daily battles. It seems that opinions about our struggles are based on the limited amount of information available and not our common symptoms, complaints and other medical issues. The information we supply will be based on relevant articles, journals and our own perspectives.
ABOUT MICHELE BROMLEY
My name is Michele. I am a 46 year old mom of 8 boys. I was blessed with 4 wonderful sons and then blessed again with 4 more when I married my husband and we became a family. I was diagnosed with Eosinophilic Esophagitis in 2007. I had never heard of this disease and never had a food allergy. I occasionally had trouble swallowing during the prior year. One day during lunch a piece of food lodged in my throat and would not go up or down. When we went to the emergency room the GI doctor told me it was a quick 20 minute procedure to remove the food bolus and I would be discharged in 2 hours. Approximately 6 hours later I awoke in recovery to learn that the food was still in there and I was going to the ICU. The next morning I returned to surgery for another 2 ½ hours until the food was dislodged.
A few weeks later I had an endoscopy with a biopsy and EoE was confirmed. This was followed by allergy tests and the taking away of all foods except chicken, white rice and applesauce. Gradually I added some foods back, but also found out that I had 25+ food allergies/ trigger foods. My list hangs on the refrigerator for everyone to see, as a reminder, so we make no mistakes while cooking. It is quite the conversation starter with visitors, who think it is impossible to survive without so many foods, but it gives me the chance to raise awareness and educate about EoE. I guess that is the teacher in me.
Today I still struggle with this disease daily. My quality of life has changed drastically for the negative. This has affected everyday life for me and my family. I never know how I will feel from one minute to the next. I don’t know whether I will be able to swallow, even water. I feel so bad that I depend on my family for so much now. We have to be careful of everything we buy and everything we cook. My family has learned to stop and read the ingredients on everything we put in the shopping cart. I have my own cooking utensils, pots, and other things for food preparation. I have to wear gloves and a mask just to bake my family a cake, which I cannot eat when I am finished and it isn't very attractive. It is so frustrating to be this sick every day. It is even more frustrating knowing how sick I feel, but looking perfectly fine on the outside. People don't believe that I am sick and even think I am exaggerating or looking for sympathy. That couldn't be further from the truth. This has been a very difficult disease to understand. It has been even harder adjusting to all of the changes. I could not do it without my husband and sons. I am so lucky to have them.
Sadly more and more adults are being diagnosed with this disease. I hope that this website helps those who suffer just like me.
Michele Bromley is an honorary board member of CURED and the Adult EGID Liaison.
About Sondra Bare
My name is Sondra and I am a wife and proud mother of 6. I have 4 boys here on Earth with me and twin girls that are in heaven. I am 42 years old and was diagnosed with EE when I was 36. I was very healthy as a child. I was a very picky eater but we only ate what we grew in our garden, fresh eggs from the coop or the wild game that dad would hunt. I never had soda or fast food growing up. The only "junk" treat that I remember was when I would visit my grandma and she would always have Oreo cookies for me. I remember my first fast food job and how shocked the other kids were that I would not eat a hamburger or fries. Years later I found myself working in the food service industry as a cook and caterer. I then started tasting things and enjoying so many more foods. It seems to me that this is when my troubles started. I would get awful attacks at night,making me so sick to my stomach. I had heartburn that was uncontrollable. I had my gallbladder removed and nearly fell apart in tears the week after when I was hit by another horrible attack. That obviously was not the cure for me. My illness reached its most difficult point around 2006. I had started a new cooking job. This job was so much easier and laid back and I knew it would be a piece of cake for me. Well, within a few weeks my body just shut down. Every joint ached, my hands swelled, my throat developed white spots, and then the horrible journey of hives began. Thus began my never ending trek from doctor to doctor. I was told I had contact dermatitis from something I was touching. I was told I was eating something different that I was allergic to. I was told I was allergic to my asthma inhaler. I saw so many doctors and no one could give me an answer. I went to every different specialist imaginable. I had my lungs checked, my bladder checked, my kidneys checked, my skin checked, my female organs and hormones checked, my allergies checked....get the point? Then my hives became worse and started to develop under my skin leaving behind horrible bruises. I got very scared. At my last straw I went to see an internal medicine/rheumatologist. I went in with the complaint that my finger joints were painful and swelling. This was a minimal symptom I had but I wanted to go under that pretense because I was afraid they would not see me if I told the whole story. Well, this doctor was amazing. She checked me out from head to toe. She got my entire life medical history. She ran so many tests on me from my thyroid, to lupus, to aids. In the meantime she sent me back to the dermatologist to biopsy my hives. When the results came back as leukocytoclastic vasculitis the doc just hung his head and kept apologizing. He said "I am so sorry but you have an autoimmune disorder". I think he felt bad because I had argued with him over and over that I was not touching or eating anything different. Back to the internal med doc I went and she said she felt that I had Celiac Disease. This made sense to me because I knew that food played a huge role in my illness. She then sent me to a GI. My stomach issues felt so much better after going gluten free but it did not help my hives. I had read that h pylori would cause hives so I asked the GI to check for that when he was checking for Celiac. I also told him about the constant heartburn and how my food got stuck. That is when the truth was found. I was diagnosed with Eosinophilic Esophagitis. Many years have gone by and I am just as confused about this diagnosis as I was in the beginning. I have never had a "clean" scope where no Eos are found. I have been to numerous allergist and GI docs and have always been sent home angry and confused. Just in the past few months I have found new, good and understanding docs that are now helping me in my journey to feel better. My hopes are that this site can help others learn and understand their diagnosis as I learn along with them. My biggest hope is that we can find a CURE!
My name is Sondra and I am a wife and proud mother of 6. I have 4 boys here on Earth with me and twin girls that are in heaven. I am 42 years old and was diagnosed with EE when I was 36. I was very healthy as a child. I was a very picky eater but we only ate what we grew in our garden, fresh eggs from the coop or the wild game that dad would hunt. I never had soda or fast food growing up. The only "junk" treat that I remember was when I would visit my grandma and she would always have Oreo cookies for me. I remember my first fast food job and how shocked the other kids were that I would not eat a hamburger or fries. Years later I found myself working in the food service industry as a cook and caterer. I then started tasting things and enjoying so many more foods. It seems to me that this is when my troubles started. I would get awful attacks at night,making me so sick to my stomach. I had heartburn that was uncontrollable. I had my gallbladder removed and nearly fell apart in tears the week after when I was hit by another horrible attack. That obviously was not the cure for me. My illness reached its most difficult point around 2006. I had started a new cooking job. This job was so much easier and laid back and I knew it would be a piece of cake for me. Well, within a few weeks my body just shut down. Every joint ached, my hands swelled, my throat developed white spots, and then the horrible journey of hives began. Thus began my never ending trek from doctor to doctor. I was told I had contact dermatitis from something I was touching. I was told I was eating something different that I was allergic to. I was told I was allergic to my asthma inhaler. I saw so many doctors and no one could give me an answer. I went to every different specialist imaginable. I had my lungs checked, my bladder checked, my kidneys checked, my skin checked, my female organs and hormones checked, my allergies checked....get the point? Then my hives became worse and started to develop under my skin leaving behind horrible bruises. I got very scared. At my last straw I went to see an internal medicine/rheumatologist. I went in with the complaint that my finger joints were painful and swelling. This was a minimal symptom I had but I wanted to go under that pretense because I was afraid they would not see me if I told the whole story. Well, this doctor was amazing. She checked me out from head to toe. She got my entire life medical history. She ran so many tests on me from my thyroid, to lupus, to aids. In the meantime she sent me back to the dermatologist to biopsy my hives. When the results came back as leukocytoclastic vasculitis the doc just hung his head and kept apologizing. He said "I am so sorry but you have an autoimmune disorder". I think he felt bad because I had argued with him over and over that I was not touching or eating anything different. Back to the internal med doc I went and she said she felt that I had Celiac Disease. This made sense to me because I knew that food played a huge role in my illness. She then sent me to a GI. My stomach issues felt so much better after going gluten free but it did not help my hives. I had read that h pylori would cause hives so I asked the GI to check for that when he was checking for Celiac. I also told him about the constant heartburn and how my food got stuck. That is when the truth was found. I was diagnosed with Eosinophilic Esophagitis. Many years have gone by and I am just as confused about this diagnosis as I was in the beginning. I have never had a "clean" scope where no Eos are found. I have been to numerous allergist and GI docs and have always been sent home angry and confused. Just in the past few months I have found new, good and understanding docs that are now helping me in my journey to feel better. My hopes are that this site can help others learn and understand their diagnosis as I learn along with them. My biggest hope is that we can find a CURE!
e.I.N.F.O.R.M.E.D.
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BENY THE BULL