Everyone whose life has been touched by an eosinophil associated disease has a story to share. Here, we feature perspectives from patients and family members who live with these chronic diseases each day. These are just a few of the “Faces of Eos”. We look forward to sharing additional stories in the near future!
My Churg Struss (EGPA) Life
CSS (Churg Strauss Syndrome/Vasculitis), now known as EGPA – eosinophilic granulomatosis with polyangiitis – is an autoimmune disease which is incurable, progressive, and can be life-threatening. Fortunately, I was diagnosed relatively early, and I am under excellent management by a team of specialists. Luckily, I have not had a “flare” since my diagnosis in 2008.
After about two years of feeling generally sick and asthmatic with a hacking cough, I was full of rashes and blisters. The skin biopsies were not conclusive but they did show very high eosinophils. On my fourth in-house hospitalization in 2008, the team of specialists put their heads together and came up with the diagnosis of EGPA.
I could no longer hold down a steady job, mostly because of fatigue. I was granted state disability (after a long battle including hiring an attorney), but I am able to drive myself where ever I need to go, and I can do pretty much whatever I need to do. EGPA has weakened some of my muscles, but physical therapy has helped tremendously. I lift some weights at home, and I do everything in my power to keep this disease at bay. Fatigue is always a problem. I certainly have some limitations, but my life is a new “normal”. Most of the disease is beyond my power, but I feel empowered by exercising, eating properly, keeping active, taking my meds religiously, seeing my doctors regularly and trying to be optimistic by counting my blessings and all the things that are going right in my life. I never feel “why me?”. I feel “why not me?” It turns out that I can speak (and fairly intelligently) all over the country on raising awareness for these diseases.
Medication-wise, I am on 5 mg of prednisone a day and 25 mg of methotrexate a week. The idea with EGPA is to see how low one can get the prednisone and still be healthy. So, compared to some of the stories I have read about eosinophilic diseases, I consider myself very lucky, symptomatically speaking.
To paraphrase Stevie Nicks, “Some days it’s a b–ch, some days it’s a breeze”. I try to concentrate on what I can do, not what I can’t do. I have occasional pity parties, but they don’t last long because I think about how much worse my life could be. Thinking those thoughts doesn’t make my EGPA any better, but it gives me perspective so I can look at the big picture and not obsess over every blood test and symptom. I try to play the hand I’ve been dealt. It’s not always easy, but do-able. Teach everyone about your disease and how it affects your life. We need to raise awareness wherever we can.
The road to an HES diagnosis
My name is Alejandra. I’m a kindergarten teacher, living in Mexico City, Mexico. I was diagnosed with hypereosinophilic syndrome (HES) in 1998.
My symptoms started 13 years ago. Initially I had itching on my torso, but quickly started to feel tired, breathless, and had heart and lung pain. In what seemed unrelated, I started to feel discomfort in my feet. They were swollen and it was as if they were burning.
An initial exam of my lungs showed some strange moving lesions which appeared to be related to parasites. My feet continued to bother me and I could no longer feel my legs from the knee down. Some skin lesions started to appear. They looked like chickenpox on my torso, vasculitis on the face, and a trail of insect bites around my calf. I went to see a dermatologist, who was baffled by the lesions, but didn’t think they were a serious condition because the symptoms didn’t match to those of an infection, and he didn’t think the heart pain was related.
A blood test showed that my eosinophil count was 79,000. Tests to check for lupus, vasculitis, scleroderma, parasites, and more were ordered, but all showed up negative. Some tests were even sent to the U.S., however at that time no one could explain my symptoms.
Over the next few months I was feeling worse and worse: chest pain, fatigue, general sickness, awful pain in my abdomen, joint pain and bruises all over my body, and I couldn’t even walk. I had lost several pounds and could barely eat.
In the hospital, doctors prescribed IV steroids to calm down the pain and to see if that would help with eosinophil count. And it did! I was finally diagnosed with HES.
It wasn’t until fairly recently that I came across APFED on Facebook and was really surprised by all the work the organization has been doing for eosinophilic disorders. I have seen the HES community growing. Although I live in Mexico, I have participated in National Eosinophil Awareness Week for two years. I make hot pink ribbons to share with family, friends and all those who ask about the meaning of them. I also wear my special pink bracelet made for this purpose.
I am glad to be able to contribute my experience to support others with HES!
A parent’s decision to place a feeding tube
Kristen H. shares her son’s story, and the road to helping him feel better:
“When Tyler was an infant, he started a milk-based formula, and reacted by screaming and refusal to feed. After switching to a soy-based formula, he spit up every feeding and sometimes even hours afterwards. He spit up constantly. His pediatrician diagnosed him with gastroesophageal reflux disease.
By the time he reached his first birthday, Tyler had been diagnosed with asthma, eczema, had tubes surgically placed in his ears due to frequent ear infections that did not respond to antibiotics, and was gagging, retching and vomiting at the sight and/or smell of some foods. Tyler had his first endoscopy at age 2 and diagnosed with eosinophilic esophagitis. After dietary changes, his asthma continued to flare. He often had fevers without apparent cause, and had constant abdominal pain that seemed to be getting worse. Allergy testing showed that Tyler was allergic to wheat, soy, milk, eggs, corn, peanuts, and sesame seeds. These foods were removed all from his diet, and while he still gained weight, his asthma was out of control and he continued to have problems with eczema and stomach pain, among other symptoms. He vomited often, gagged at mealtime, constantly cleared his throat, and would refuse to eat for days at times.
“I found the APFED website and became a member. All the information was incredibly helpful. With research, I found an EoE clinic in California. I made an appointment and Tyler was seen by a team of specialists! We were there for four hours talking to a gastroenterologist, an allergist, a nutritionist, a nurse, and a few others. We all agreed on a treatment plan that we tried for 2-3 months, and then another endoscopy was performed and a high number of eosinophils were still in his esophagus. At this time, Tyler started to lose weight.
“Tyler had a g-tube placed. It was the most difficult decision I ever made up to that point. However, only a few days after the surgery, I noticed a change in my son. A little over 2 months later on an elemental-only diet, Tyler’s stomach pains were gone! His asthma has not flared up and he is now running around like a 6 year old boy should. His last scope showed only one eosinophil and he has started food trials! We have a long road ahead of us still, but hope has been restored. APFED has helped with that, along with a few new friends from a local support group. This is a horrible disease, but with the support of others living the same life, we have hope. We have shoulders to cry on, ears to listen, and stories to share.”
I just eat different
Hi! My name is Ricky and I am 11 years old. I was born with eosinophilic colitis (EC).
When I was a baby, I was very sick, and more than a dozen doctors couldn’t figure out what was making me so sick. My mom spent a lot of time on the Internet searching and finally found APFED. After that I went to a specialist and was finally diagnosed with EC.
I don’t remember those first few years, but I do remember the years of having a feeding tube and food trials. For two years I could only have formula that I got through my tube and would sometimes drink. My first food trial was when I was 4 years old and I got to try apples. I remember my grandma going to a neighbor’s orchard to pick them herself, so we would know there were no chemicals used on them. Now there are only 14 foods I can’t have. Some I failed before, and passed when we tried them again a few years later, like dairy. Or some, like egg, we had to try a different kind for me to pass them (I failed white eggs, but I can have brown eggs).I think the hardest part of living with this disease is the food trials. I guess I am “lucky” that I react immediately to a failed food and usually don’t get the chance to really get used to having it. Someday I would love to be able to eat popcorn or corn on the cob, but I am allergic to corn.
I do ok with parties and other stuff. It is hard sometimes, because we usually have to bring my food with us, and I don’t get to eat the same thing as everyone else. But I am lucky that my mom has always made sure I have something close to what everyone else is having. If they have pizza, my mom brings me my own pizza. Sometimes it’s really funny, because all the other kids end up wanting what I have. The other hard thing is eating out. We can’t just stop when we get hungry — we have to find one of the few places where it is safe for me to eat.
I’m okay living with EC. My life is different than the life of all my friends, but I’m doing okay. I get to ride my bike, race my slingshot, and all kinds of stuff. I just eat different. My mom has taught me that I was given this disease for a reason — to help other people. So that is what and my family and I do. I use my racing to create awareness of eosinophilic disorders and raise money to educate doctors. I send bears out to kids who are getting feeding tubes to make them smile.
My life is just different, but it is not horrible. Things might be hard, but they are not impossible. Someday I plan on getting married and having kids of my own. I know that my children may have this disease too, but that’s okay. I will teach them to be like me, and be happy with all the great things they can do.
Striving to make a difference
My name is Deb. I’m now a mother of two awesome adult girls, and live near Philadelphia with my husband and dog. I was diagnosed with eosinophilic esophagitis (EoE) in 2008. A little less than 10 years prior, food stuck in my throat, and my life changed. For so many years after, I struggled with not keeping food down (often not even water), no one willing to hospitalize me, family horrified, barely holding a demanding job, and significant weight drop, among other challenges. My doctors continued to prescribe protein pump inhibitors that never worked. The constant chest pain, nausea, vomiting, dysphagia, stabbing back pain, and lack of sleep continued for years.
I was sent to a dysphagia clinic where they tried to teach me the “swallow hard” technique by forcing me to eat things I couldn’t swallow, like a hoagie. They also suggested that Italian ice was the best calming agent for what appeared to be esophageal spasms – I ate so much of this hoping for relief and then found that severe cold make my spasms worse. I decided not to return. Out of desperation, I learned meditation techniques and started acupuncture. Although not cures, these helped me survive the especially brutal days.
Then one day in 2008, I wound up in the emergency room when food got stuck in my throat. The ER doctor said “I know what your diagnosis is!” and I was ready to kiss his feet. I began for the search for a doc who understood EoE. Five gastrointestinal doctors later, I found my “savior doctor”. He has compassion, knows EoE better than most, and is willing to say he “doesn’t know” certain aspects of the disease. We worked together to decide next steps and chose an elimination diet to test the waters. This was so dreadfully difficult, but so worthwhile. We have discovered my triggers are soy, dairy, and wheat I am now on my way with focused attention to avoid these foods to gain a much better quality of life!
I am striving to make a difference as an adult EGID advocate, especially for those who don’t have a diagnosis, and for those still trying to find their way to good care. One of my worst memories is to be at a child’s sport game trying desperately to find a private place to get sick. I want to help others avoid that. My tireless goal, while juggling work/life, is to help connect the dots from patient to doctor and vice versa. The children who need to feed through tubes are my motivators!
Keep putting those feet on the ground each morning to face the day, and advocate for yourself!
A teen’s perspective on life with EoE
Hi. I’m Marguerite and I am 14 years old. I was diagnosed with eosinophilic esophagitis (EoE) when I was 2 years old so I don’t really know anything different, but to others my life is quite weird. My g-tube was placed in December of 2011 and the reaction from my friends at school was interesting: girls who used to be mean to me were suddenly nice.
After a while I figured out that this was because I was getting so much attention. Eventually, they decided I was “done” and they dropped me.
I guess it wasn’t fun to hang out with someone who is always tired and is only occasionally in school. They also started rumors that I was anorexic and bulimic because they never see me eat “real” food and I gain and lose weight so quickly. People act as if I want to be sick all of the time – yeah right!
It’s hard going to parties and seeing food everywhere. People eating good food — and the smells! Everything smells so good and I can never eat it. I just drink my water.
I soon realized who my true friends were. They don’t care that I leave parties early (or don’t come at all because I’m too tired). They are always making sure that I am okay, and they know what foods I am eating and get so excited when I add new foods! Whenever I feel down, they are there to pick me back up.
But even with a solid group of friends, life with EoE is hard. It’s difficult to not feel out-of-the loop because I miss school for weeks on end because I’m so tired and I get sick so often. I have a homeschool teacher who helps me catch up at school, but I miss the fun stuff that happens during lunch and after school.
Fortunately, when I go to the APFED conference I can feel “normal” for those few days. I get to hang out with some really great teenagers who all know what it is like to feel tired all of the time, to be excluded from social events, and to not eat. They get it that food isn’t fun and doesn’t have to be the center of every social event. They also get that this is life, take it or leave it.
Hi, I’m Remington and I am 13 years old. I have eosinophilic esophagitis (EoE). Basically, I have a disease that keeps me from eating. When I eat food, I become very sick. I drink formula instead. Although it is hard and sometimes I hurt, I live a normal life. I go to public school, I go to lunch with my friends and sit with them in the lunchroom, I play competitive baseball and I don’t like to study for tests. See, I’m just like most kids, except I can’t eat.
The hardest part about my life is that I do remember what food tastes like. I have lived on elemental formula since the age of 4 and I drink on average 14 “juice” boxes a day. I have been on food trials, I have tried steroids and other medicines but my body hurts when I have those things. My parents tell me that I have a fighting spirit and that I can do anything that I want to as long as I listen to what my body tells me.
There is so much that people don’t know about me and this disease. Yes, my life is tough and I have to overcome many obstacles that most kids never have to, such as pain, sickness, doctors, surgeries, carrying a lunch box everywhere I go, and not being able to eat at restaurants. But even though I wish I could eat there are others who have it worse than I do. I remember one time when I was feeling sorry for myself because I had to go for another scope. But, in the lobby of the hospital, I noticed kids that were in wheelchairs, some had tumors all over their body, and others were hooked up to machines as they walked by. I then realized that I really did have a good life, even though I had EoE and had to go through all of these procedures. There are other kids who spend way more time than me in the hospital and aren’t even able to play baseball. My mom told me once to make a choice: choose life or choose the disease. I choose life, and I want people to see that I am living with EoE.