Raising Awareness-Eosinophilic disorders

This week, May 19th-25th, 2013 is National Eosinophil Awareness Week!  If you have followed my blog for a while, then you already know something about eosinophils.  If you are a new reader, you can learn a little about Eosinophilic Gastrointestinal Disorders (or EGID), specifically Eosinophilic Esophagitis (or EoE), by reading through some of my earlier posts about our journey with 2 of our daughters and their struggles with EoE, starting with this one.

Eosinophils (E-o-'si-n-o-"fils) are a specific type of white blood cell generally associated with allergies, parasites and cancer. Eosinophil Associated Disorders are a group of uncommon (rare) chronic illnesses. While they are still considered rare, these disorders are rapidly
emerging as a healthcare problem worldwide. Yet, many patients suffering from these disorders go
undiagnosed for years due to a lack of information or awareness of these diseases.

In eosinophilic disorders, a high numbers of eosinophils accumulate in body tissues causing inflammation and damage.  These disorders are classified by body tissue where eosinophils accumulate. For example, in eosinophilic esophagitis the eosinophils attack the esophagus.
The only way currently that these disorders can be diagnosed and monitored is by tissue biopsies. What this means is that in order to be diagnosed, my daughters had to go into the operating room and have upper endoscopies and colonoscopies during which multiple biopsies were taken of the tissue throughout the digestive system.  Cassidy, pictured here, has been scoped and biopsied at least 10 times (after a while you actually start to lose track) and Chloe, who was only diagnosed a little over a year ago, has been scoped 5 times and hospitalized twice already. In both cases, during the first set of scopes, large numbers of eosinophils were found in the esophagus tissue samples when the biopsies were sent to the lab.  The only way to monitor the progress of the disease or the effectiveness of treatments is to repeatedly go back into the O.R. and have more biopsies taken. This will go on to some extent probably for the rest of their lives.

 Eosinophilic Gastrointestinal Disorders render the patient unable to tolerate food proteins. Eating food causes damage to the GI tract, pain, and symptoms similar to those you would experience from a
stomach virus. Sometimes the pain is bad enough each and every time they swallow that they just stop eating all together. Yes, really. It gets that bad. Depending on the number of foods that trigger the eosinophilic reaction, some who live with EGID need to stop eating ALL foods just to control the damage and inflammation. In these cases, the patient is given a special amino acid formula through a feeding tube. Chloe was dependent on a feeding tube for 2 months last summer, and truthfully we felt lucky that she was able to stop using it after such a "short" time. Eosinophilic esophagitis can also be triggered by environmental allergens, causing flares that can only be controlled with the extended use of steroids.

All of these are chronic diseases requiring long term treatment, with no known cure.  They are also not something that people who suffer from them will "outgrow".
Sometimes the symptoms can be well controlled with dietary changes, sometimes they require steroids, but the disorders are now believed to be relapsing and remitting, which means that you can have some success with treatment but could then have flares or relapses. During relapses and flares, these are debilitating diseases leading to missed work, school, social outings, etc.

Also, delays in diagnosis are common. Symptoms vary from person to person and can mimic other, less serious diseases. Even now with prevalence of the diseases on the rise, many doctors and nurses have not even heard of these diseases.





Symptoms of EGID can vary depending on the part of the GI
tract affected, and may include:

• Reflux that does not respond to usual therapy
• Dysphasia (difficulty swallowing)
• Food impactions (food gets stuck in the esophagus)
• Nausea and Vomiting
• Diarrhea
• Failure to thrive (poor growth, malnutrition, or weight loss)
• Abdominal or chest pain
• Gastroparesis (delayed emptying of the stomach)
• Poor appetite
• Bloating
• Anemia


If you would like more information about eosinophilic disorders or would like to make a donation to help support research, please visit the American Partnership for Eosinophilic Disorders at www.apfed.org or the C.U.R.E.D. Foundation at www.curedfoundation.org

If you think that you or someone you love may have an eosinophilic disorder, see a doctor!

If you have been recently diagnosed, please find a support group or seek out the online EOS community. Knowing that you are not in it alone can really make a huge difference, especially on the roughest days. You can learn about some of our own experiences with EoE in some older posts and in other blogs around the internet. Most all of us are willing to discuss our experiences.

I welcome comments and messages from anyone with anyone from the EOS community or anyone at all with questions. 

Waste Free Wednesdays - Coffee Cups To Go

Photo by Chandru Ramkumar

Never thought too much about stopping for coffee while running errands?  I understand, I do the same thing.  As far as reducing waste, the problem doesn't rest with the coffee, but with the paper cup that it comes in.  Did you know that Americans alone use 16 BILLION paper coffee cups each year?  Yes, seriously. That is more than 6.5 million trees each year. Not only does that create 253 million pounds of solid waste yearly, but before those cups become waste it takes 4 billion gallons of water - enough to fill 6000 olympic size swimming pools - just to make those cups in the first place. And because they are coated with a plastic resin called polyethylene to prevent leaks, the cups cannot be recycled. Before you calmly explain that you are responsible for just one or two cups a week, remember that no one person is using 16 billion cups a year.  Like almost everything else with major impact, both positive and negative, it is a group effort.

How hard is it to just toss an empty travel mug into your car or bag?  Trust me, I've done it.  It's pretty darn easy.  And some coffee shops and vendors will even knock a little off your tab for providing your own cup. Win-win situation if you ask me. I keep a clean plastic one in my car in case I forget my favorite one on the way out the door in the morning, but I rarely have to use it simply because now I have gotten into the habit of bringing a mug when I leave the house.

Well, it's my version of a mug anyway.  I drink out of a simple mason jar.  While this is quite a trend right now in party planning and even at rustic weddings, it is also another very basic and reasonable use for one of the most reliable and useful products on my house.  I love mason jars.  They are durable, free from weird chemicals, non porous, easy to clean and in the event that one breaks the pieces are recyclable. I use them for canning, of course, but also for dry food storage, with a soap pump added to the lid for dish detergent in the kitchen, for starting fresh sprouts on the kitchen counter, for making homemade yogurt and yes, even as a coffee (or bloody mary) cup.

I do prefer it when my cup has a lid.  With 4 kids and a large dog it's only a matter of time until someone bumps my arm and sends hot coffee sloshing all over tender skin or a carefully mixed cocktail splashing into the keyboard of my new laptop (true story there, folks!)  Pinterest is full of ways to craft your own straw top from the original 2 piece canning lid or punch a hole for the straw in a cute cupcake paper for color coordinated party ware.  More power to you, crafty ladies out there!  But for my daily cup of joe, I ordered myself a nifty reusable sip top made just for mason jars (wide mouth or regular, sip top or straw top) from Cuppow.  It's BPA free and dishwasher safe.

Hot coffee in a glass jar does make it a bit tricky to grab, but I just crocheted a sleeve out of cotton for mine.  If you aren't too keen on the yarn and hook idea, just grab a sock that has lost a mate and cut the foot off of it.  The remaining cuff? Instant mason jar sleeve.  Added bonus to the sleeve is that it not only protects your hands from hot beverages, but it also prevents a condensation mess when you are enjoying an iced drink.

Now look at how green you are!  Saving the planet, one coffee cup at a time!