How You Can Help

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[Deutsch unten]
For many people with Eosinophilic Disease, eating a normal meal is an impossible dream. Can you imagine life without food?
So many patients (adults and children) are struggling at this time – hospital stays, food getting stuck in their throats, medication problems, formula coverage and the list goes on.
How can you help?
1. Go to amazonsmiles.com and choose “CURED NFP” as your charity of choice. You’ll be redirected to the main Amazon site. Amazon will then donate 0.05% of your purchase price to CURED.
2. Donate yourself. Even just 1$ makes a difference, it’s tax-deductible, and 100% of the profits go toward finding a cure. curedfoundation.org/donations/
3. Buy CURED merchandise at curedfoundation.org/gift-shop/ or bravelets.com/bravepage/eosinophilic-disorders to help start a conversation and spread awareness.
Für Vielen die unter der Eosinophilie leiden, ist ein gewöhnliche Mahlzeit einen unmöglichen Traum. Kannst du dir vorstellen ohne das Essen zu leben?
Viele Patienten (Erwachsene sowie Kinder) leiden zur Zeit – halten sich im Krankenhaus auf, die Nahrung bleibt in der Speiseröhre stecken, Probleme mit der Medikamente, ob die Krankenkasse die sämtliche Kosten übernimmt, usw.
Wie könnt ihr behilflich sein?
Die CURED (Campaign Urging Research for Eosinophilic Disease) Foundation bietet mehrere Möglichkeiten an Spenden zu sammeln.
1. Für die die bei amazon.com (Sprich: die amerikanische Seite) einkaufen: bei amazonsmiles.com “CURED NFP” wählen und weiterhin immer von da aus auf die Amazonseite kommen damit Amazon 0.05% des Einkaufspreises an CURED spendet.
2. Selber Spenden. Selbst $1 macht eine Unterschied und 100% der Gewinn geht an die Research! curedfoundation.org/donations/
3. CURED klamotten bei curedfoundation.org/gift-shop/ oder bravelets.com/bravepage/eosinophilic-disorders kaufen, um eine Diskussion darüber anzufangen und dadurch Verständnis und Aufmerksamkeit über diese seltene Krankheit wecken.
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Eosinophilia & Elimination

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Years ago, I was hosting a couchsurfer who told me why dairy and wheat, in the form we typically have have access to, are bad for everyone. I listened, but I really couldn’t imagine my life without either. My diet then consisted largely of pasta with meat (I tended to forget the veggies altogether) and looots of milk. I’d often wait so long to eat that all I wanted was milk – only after downing a jug would I finally get something solid in me. He explained that the reason milk made me feel full was because I was bloated.

It wasn’t until a year later that I finally made the switch to goat’s milk. Goat’s milk isn’t homogenized like commercial cow’s milk, goats weigh the same on average as humans (cow’s milk is intended to get a calf up to the size of a cow), and goat’s milk is more similar to human milk. So even though we aren’t meant to digest large amounts of dairy beyond infancy, if you’re going to anyway, goat or sheep’s milk are the better choice. It wasn’t easy and I often cheated, but eventually I managed to stick with it enough to notice the difference when I didn’t.

Another year later, I temporarily repeated the same experience with grains, inadvertently eliminating my need for goat’s milk as well. Initially, I was craving like crazy, but eventually I adjusted and was unknowingly adhering more or less to a paleo diet. After a few months, I decided there was no need to restrict myself more than necessary and attempted a reintroduction. Re-adding grains seemed fine,  but it did leave a noticeable heaviness in my stomach as well as a visible bulge. I was also disappointed to discover that I could no longer tolerated any form of milk. I asked my couchsurfer friend if I wasn’t just making myself unnecessarily more sensitive. His response was, it may seem that way, but once you’ve rid your body of everything toxic you’ll feel so much better and even notice your taste buds becoming more perceptive.

Fast forward another couple years to when elimination was no longer optional, and I now know just how true that is. Now that my diet consists entirely of fresh/frozen whole foods, prepared daily by yours truly, I can distinctly taste the difference between organic and non-organic. Of course, organic chocolate chip cookies aren’t inherently healthier than non-organic bananas, but I was appalled to learn that non-organic olive oil is cut with other oils, despite that not being noted anywhere on the label. So while I buy organic apple sauce and chocolate in order to avoid unnatural preservatives and emulsifiers, I prefer organic carrots and olive oil purely for the taste. But more importantly, thanks to elimination, all the digestive and bodily pains have stopped, including the regular choking and constant throat-clearing.

I definitely understand not wanting to give up the foods you so dearly love, and if you tolerate PPIs or antacids, you do have a means of feeling fine and continuing to eat normally. But not only was that not an option for me, it also seemed too much like trying to control the symptoms rather than solving the problem itself and my body clearly agreed.

Elimination was rough initially, but it eventually gave me some much-needed clarity. One day I was out and hungry so I treated myself to a schokocroissant. It tasted great and everything was fine until that evening when I choked on a bite of fish. I knew the fish wasn’t the problem; the only thing that had changed was the croissant and the fact that I was choking told me that wheat was definitely a trigger and had caused my oesophagus to narrow. But because it wasn’t the trigger itself that I was choking on, that’s not something I could easily have been certain of before.

CHALLENGE

A challenge for all you healthy people:

The top dietary triggers for someone with an Eosinophilic Disorder are wheat, dairy, legumes, seafood, and eggs. Try making it just one day without eating any of the above!

Eosinophil Awareness Week 2017

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Today marks the beginning of this year’s Eosinophil Awareness Week. On that note, here’s an Eosinophil!

These guys, called Eos for short, are one of 6 types of white blood cells. They’re normally transparent, but appear red after staining with Eosin, a red dye. They develop in the bone marrow, before moving into the blood stream and exist to combat parasites and (along with mastocytes and basophils) respond to allergens. When activated they degranulate (explode) releasing histamine and other chemical mediators.

For a normal person, 1-6% of your white blood cell count, should be composed of eos. They can also be found in the medulla, lower GI tract, ovary, uterus, spleen and lymph nodes. If more than 6% of your white blood cell count is made up of eos (and you aren’t hosting any parasites) and/or eos are found (via biopsy) in your lungs, esophagus, skin, or other organs, you have an eosinophilic disorder.

The presence of excess eosinophiles where they don’t belong is a sign of an overactive immune system that perceives a threat where there is none. In the absence of parasites, the eos attack environmental and dietary triggers. When they degranulate, the released mediators cause inflammation. With Eosinophilic Esophagitis, for example, that inflammation can create difficulty swallowing or even cause food to get stuck (impacted), requiring an endoscopy for removal and sometimes staples to patch the damage caused by the impaction.

For many, it becomes so severe they can only safely eat a handful of foods and others can only tolerate a pre-digested, amino acid formula because they react to all whole proteins.

In order to raise awareness about this rare, immune-mediated disorder, I created some eosinophil merchandise. I hope a few of you will buy something so I can get one too! (You have to reach a minimum number in order for them to be produced)

English: Click here to see all options!

French:

German: Hier clicken um alle Optionen zu sehen

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