Allergy Shmallergy

Simplifying life for families with food allergies.

Advocacy: Sesame Seed Labeling September 7, 2017

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Carol M. Highsmith [Public domain], via Wikimedia Commons

Last week, I teamed up with Allergy & Asthma Network, a leading non-profit, to begin a discussion about adding sesame seeds to ingredient labels.  We met with committees on Capitol Hill who were receptive to our argument.  It’s a first step in a potentially long process – but a step in the right direction!

 

Sesame: the 9th Food Allergen? explains the rise in sesame allergy and the difficulty faced by those who are allergic.  When the Director of the Division of Pediatric Allergy and Immunology at Johns Hopkins University School of Medicine, Dr. Robert Wood spoke to WebMD in 2012, he believed sesame seed allergy was so prevalent that it had likely climbed to the 6th or 7th most common allergen in the U.S.

 

Without required labeling, sesame seeds can be masked under many different names.  They appear in both food as well as hygiene and beauty products.  There is a relationship between tree nut allergies and sesame seed allergy – those allergic to one are three times as likely to be allergic to the other.  But unlike nut allergies, sesame oil can cause potentially severe reactions for those who are allergic.

 

Currently, only the “Top 8” allergens are required to be explicitly labeled in the United States.  Those allergens are:

Dairy

Eggs

Soy

Fish

Shellfish

Peanuts

Tree Nuts

Wheat

Many other industrialized nations already label for sesame seeds including Canada, the European Union, Australia, and Israel.

 

I will keep you posted on new developments as we continue to speak to decision-makers on this and other key allergen issues.

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Food Allergy Help for Hurricane Harvey Families August 30, 2017

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Families just like ours need help.  They find themselves in the path of Hurricane Harvey and many are without resources.  Not only are many thousands of people evacuated from their homes, but those who remain will likely not have access to supermarkets or deliveries as roads and commercial buildings will be effected for days or weeks.

 

The folks at the San Antonio Food Allergy Support Team posted an update today about how to donate food allergy-friendly food to those in southeast Texas.  Monetary donations are the best way to make an immediate impact.  And, food allergy-friendly donations, particularly those that make feeding children easier, are greatly appreciated.

 

Here is Allergy Shmallergy’s link to Emergency Food Allergy Donations on Amazon.  I will continue to update this list throughout the upcoming days.  This is just to get us all started and is, by no means, an exhaustive list of needs.  Feel free to send your families’ favorite allergy-friendly foods, but remember that it should be shelf-stable and not require refrigeration.

Emergency Food Allergy Donations
Link: http://a.co/129iX7e

 

Please read below for details.  And, remember: there are MANY excellent organizations that need assistance now.

 

Thank you in advance: Your help is appreciated beyond words!

 


From the San Antonio Food Allergy Support Team:

[Post updated Wed. 8/30 at NOON CST]

Texas was hit very hard by Hurricane Harvey.

Many of the people who have been evacuated from the Corpus Christi area are already here in San Antonio. We have some evacuees from Houston, but are expecting thousands more.

If you’d like to help food allergy families, here’s how…

The San Antonio Food Bank is coordinating food efforts to help ALL of Texas hurricane victims right now. San Antonio is clear and sunny and having no issues with roads closures or mail delays (unlike Houston).

San Antonio Food Bank
FOOD ALLERGY FRIENDLY
5200 Enrique M. Barrera Pkwy
San Antonio, TX 78227-2209

(210) 337-3663
Info@safoodbank.org
Mon-Fri 8am-5pm
https://safoodbank.org/

The information on the “Hurricane Harvey Emergency Response” pops up on their main page…scroll down to see all options.

•Folks can donate “MONETARY DONATIONS” and put in the NOTES section (at the bottom) that they want their donation to go to “FOOD ALLERGY FRIENDLY FOODS” – this may make the most immediate impact.

•Food allergy companies or donors can send “MATERIAL DONATIONS” food allergy products directly to the San Antonio Food Bank (address above) and clearly mark them as FOOD ALLERGY FRIENDLY – If possible, include a clear message that it’s food allergy friendly on the outside of the box, in the second address line, and on the inside of the box.

•Shipments direct from AMAZON: If you are sending allergy-friendly items directly from Amazon.com, you can enter “FOOD ALLERGY FRIENDLY ” in the “Address line 2” field for the address and include it in a “gift message” which would be inside the box, to help with package sorting.

*San Antonio Residents – You can donate food allergy friendly items to the SA Food Bank or the City Council Offices listed. Please clearly mark them as “FOOD ALLERGY FRIENDLY” inside and outside and if possible pack them in a sturdy box. You can sign up to volunteer at the SA Food Bank (you must sign up ahead of time).

FYI FARE and KFA/AAFA have blog posts with additional details. Enjoy Life and Sunbutter companies are already planning to send donations. AAFA is working with someone from the EoE community. If you happen to have a personal corporate connection looking to donate, please have them contact Chad Chittenden, Director of Food Industry Partnerships at cchittenden@safoodbank.org (210) 431-8313, but I’m sure he’s swamped and other organizations are already reaching out to companies.

–Susan & Selena — San Antonio Food Allergy Support Team (volunteer leaders & FA moms)

P.S. There are many other organizations that need general help (including the Red Cross and Blood Bank). Thanks to any of you who are helping in whatever way works for you. 

 

 

Best Allergy Blogs of 2017 May 8, 2017

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Healthline compiles a list of each year’s best allergy blogs each of whom serves as a valuable resource to its readers.

 

Allergy Shmallergy is once again thrilled to be on this list and amongst such fantastic company.  I’m an avid reader of many of my co-honorees!

 

Thank you to those at Healthline for being an excellent resource to us all.  And congrats to all those on the list!

 

Click here to check out all the wonderful and motivated writers, advocates and innovators who are trying to make life better and easier for those with food allergies.

 

 

MLK Day: Inclusion and Action January 13, 2017

Filed under: Advocacy,Uncategorized — malawer @ 12:01 am
Tags: , , , ,

One week ago, I found myself chaperoning a large group of 6th graders on a field trip to the National Cathedral.  You could tell right away we had a great guide.  She was 84 years old and wore a headset microphone that was clearly turned off but still commanded the kids total attention.  A former educator, she wasn’t just a teacher (and a student) of history.  She was part of it.  She lived it.  She was woven into story after story about the cathedral and its visitors.  As our guide led us to the pulpit where Martin Luther King, Jr gave his last sermon, she described the mood of the sermon as solemn – almost as if he knew he may not make it. And, she would know.  She sat and listened only a few feet from the man himself.

 

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As we approach Martin Luther King Jr. Day, there are two things that stand out on my mind.  Two things that are universally important – but especially critical to food allergy families whose worlds are fraught with uncertainty.

 

The first is INCLUSION.  The effort of inclusion is an act of kindness and humanity.  Everyone wants to be welcomed by their peers, their parents, the people around them. Inclusion is an act of thoughtfulness.  So much of coming together involves food:  in times of happiness and celebration, sadness and consolation.  Food is a hallmark of society, tradition and culture.  When we don’t make accommodations to include a member of our group, we’re sending a message that they are not a valued member of our society.

 

I know I’m preaching to the choir here.  As food allergy parents and those with food allergies ourselves, I know you understand.  It nearly brings me to tears of appreciation when someone goes the extra mile to include my son – even in the smallest way.   It’s not lost on him either.  He feels seen, validated.

 

Efforts of inclusion, of focusing on ways to connect with each other, is more important today than it’s ever been.

 

The other sentiment that keeps circling around my brain is ACTION.  If we want to improve life for us and our kids, we need to live actively.  The path to a better, more understanding community is involvement.  While we wait for extended family, friends, peers, teachers, and school administrators to understand and support the needs of our particular community, let’s connect with one another and actively help each other out.  When you’re sending in a birthday snack, call the other food allergy parent in the classroom and find out if your snack is safe for their child.  Decorate the peanut-free table and make it THE place to sit in the cafeteria.  Talk to your child about what to do if they see a friend having a food allergy reaction.  Help educate a friend who recently received a food allergy diagnosis.  Check in with them and let them know you’re there to vent frustrations to and to celebrate victories with.

 

Martin Luther King Jr. once said,“Life’s most persistent and urgent question is: ‘What are you doing for others?'”  This is why we celebrate the memory and influence of Dr. King by engaging in service.  When my kids are involved in being charitable with their time and creative with their energy while helping others, they take ownership of and are active participants in their community.  Their world becomes less uncertain and more able to be shaped by their direct actions.  Let’s be inclusive of one another.  Let’s be kind and supportive of each other.  Maybe others will pay that kindness forward.  And, maybe, just maybe, that kindness will find its way back to you.

 

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Photo taken by Sharon & Nikki McCutcheon

 

 

 

Help Fund a Cure for Food Allergies January 10, 2017

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“Why can’t I just be like everyone else?”

If you have a child with food allergies, you’ve likely heard this heartbreaking sentiment from your kid.  We’ve all had to console this same child who just wants to put aside his/her food allergies and anxieties even if only for a single day.

Parents would go to any length for the sake of their kids.  Food allergy parents often do by preparing safe food, educating others, strategizing for school, holidays, play dates, and celebrations.

 

But how many of us have done 3,000 burpees for them?

 

That’s what fellow food allergy parent, Mike Monroe, plans to do on January 25th in order to raise money for ongoing research for a cure for food allergies.  Mike’s goal is to raise $50,000 to support cutting-edge research examining novel applications of cellular therapy for the millions of kids with food allergies being explored at Children’s National Medical Center in Washington, D.C.

 

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marines_burpee by U.S. Embassy Tokyo via Flickr

 

What’s a burpee, you might ask?  It’s a combination of push-up/plank, squat and jump performed in combination.  Try one right now!  Do another.  I think you’ll agree: it’s NOT easy!  Mike plans to complete 3,000 of these in under 12 hours.

What can you do to support Mike?

 

1.  Watch this video about Mike’s incredible motivation – his son, Miles:

 

 

2.  Consider a donation:  Every little bit helps get us all closer to a cure for food allergies.

3K Burpee Challenge for Food Allergies

3.  Share this post!  Please share this with your family and friends, share via Facebook, Twitter, Instagram and other social media channels.  Let’s support Mike and researchers to help our own kids and the millions who face life threatening food allergies every day!

 

 

Donate:

http://childrensnational.donordrive.com/campaign/BurpeeProject

Blog:

http://www.3kburpeechallenge.com/

Facebook Page:

https://www.facebook.com/3KBurpeeChallenge/

YouTube Video:

https://www.youtube.com/watch?v=KSVGTkFtnyk&feature=youtu.be

 

The High Cost of High Prices: EpiPens’ Real Cost to Families August 25, 2016

Filed under: Advocacy,Preparedness — malawer @ 9:12 am

With all the talk about rising cost of EpiPens, it’s important to remember who this situation impacts the most.  At-risk and food insecure families.  There has been a lot of media attention recently focused on the price of EpiPens, but these families, who are already living paycheck to paycheck, have been bearing the burden of added anxiety over whether they can afford the only life-saving medication available for their children for years.  Add in what I most recently learned about the limitations of some ambulances to carry and use epinephrine and there may be a healthcare superstorm brewing on the horizon.


 

By way of background…

 

It’s all over the news:  EpiPen prices have climbed over 400% in the last 10 years, making this one and only lifesaving drug nearly – if not completely – unaffordable for many families.  Ten years ago, a pair of EpiPens cost between $75 and $100.  Today, they are sold for $600-700.  Understanding that families need multiple sets (for school, aftercare programs, home and on-the-go), the financial burden becomes even greater.

 

While there may be programs that do benefit families with certain kinds of healthcare plans and help mitigate the cost of EpiPens, there are a significant number of families who are struggling to justify the cost of this medication.  These aren’t always low income families, some are typical middle class families who earn just enough to take care of their current needs.  The rising cost of EpiPens is tipping that delicate balance unfavorably.

 

As EpiPen prices soar, so does the cost of NOT carrying them.

 

Given the high cost of EpiPens coupled with their relatively short shelf life, families are being forced to make a difficult choice.  And some are choosing to forego filling their prescriptions. More and more, families whose finances are stretched thin are relying on emergency responders as their first line of defense should a severe allergic reaction occur.  They are operating without a safety net and hoping that emergency medical care will catch them.

 

But what do you do if the ambulance you’re waiting for isn’t carrying epinephrine?  What if the EMT that arrives isn’t authorized to administer it?

 

This is the case in many cities and counties across the United States.  The ability to carry epinephrine as well as the local protocols authorizing EMTs to administer it vary from place to place. [Please read: Does Your Ambulance Carry Epinephrine?]

 

This collision of high EpiPen costs and the inconsistent ability of emergency responders to help may cause a far larger problem.  Already low income families* pay 2.5 times more per year on emergency room visits and hospital care than higher earning families.  And, in a 2013 study conducted by FARE, results showed that when people suffering from anaphylaxis used emergency care, epinephrine was not usually used to treat their condition.  It appeared to the researchers that even seasoned emergency medical professionals were reluctant to use epinephrine – despite the fact that it is known to be a safe drug with few short-term side effects.

 

In FARE’s study, 58% of those who called 911 administered epinephrine before an ambulance arrived.  In a life-threatening situation when every second counts, what will happen if more cases of anaphylaxis arrive at the emergency room without having received epinephrine on scene OR en route?  It appears many will also not receive it in the emergency room either.

 

How will lower-paying municipalities compete with higher paying counties and cities to retain competent, capable paramedics and advanced EMTs (those most often allowed to administer epinephrine)?

 

What role does cost play in local government decision-making regarding whether or not to stock ambulances with EpiPens and who has the authority to administer them?

 

These are only some of the unanswered questions that are starting to boil to the surface.   I hope Mylan’s expanded efforts to get EpiPens in more hands helps some of these at risk families.   But I remain concerned that the confluence of high prices and inconsistent policies governing emergency medical use of epinephrine will continue to cause a ripple effect across the healthcare spectrum.  I just hope it remains a ripple and not a tidal wave.


 

* A study, co-authored by Dr. Richi Gupta, published in Pediatrics defined low income families as those earning less than $50,000 per year.

 

Sesame: The 9th Food Allergen? May 24, 2016

Filed under: Advocacy,Grocery and Supermarkets — malawer @ 1:36 pm

Many people realize the seriousness of living with some of the top food allergens like peanuts, tree nuts and shellfish.  But few are aware of the challenges of living with the fastest growing allergen: sesame seeds.  Here’s what it’s like to manage a food allergy outside of the well-know, well-labelled “Top 8.”

My most recent article appears in The Allergy and Asthma Network’s magazine, Allergy and Asthma Today (Summer 2016 edition).  Check out the the rest of this incredibly informative resource:  Allergy and Asthma Today (Summer 2016, Vol 14, Issue 2).

It looks amazing in print, check it out:  AAT Food Allergy Column – Sesame Summer 2016

Or, read it here:

 

 

photo courtsey of Foodista.com

As a toddler, my son was diagnosed allergic to eight different foods: peanuts, tree nuts, dairy, eggs, wheat, soy, corn and sesame seeds. Finding foods manufactured without cross-contamination to nuts is tough; meals that don’t use butter, a challenge; and I dare you to find a commercial meal that doesn’t contain soy. But of all the foods my son has been allergic to, it’s sesame seeds that have caused the most problems. By far. And, of all the food allergies he wishes to outgrow, sesame seeds are at the top of his list.

 

So, why is something this small causing such big problems?

 

Of the approximately 160 foods that people are allergic to, just eight are responsible for 90% of all food allergy reactions. In the U.S., those “top 8” foods are:

  1. Dairy
  2. Eggs
  3. Fish
  4. Shellfish
  5. Tree nuts
  6. Peanuts
  7. Wheat
  8. Soy

 

Sesame seeds are number nine.

 

Sesame allergy is growing at a faster rate in the United States than other food allergies. Many believe this rise may be partially due to the prevalence of international cuisine on American plates.

 

Because sesame is a less common allergy, it can be difficult to get proper information about sesame ingredients and manufacturers are not required to list it by name on labels.

 

Sesame is commonly found in Middle Eastern, Indian and Asian cuisines; it offers protein in vegetarian dishes. Sesame shows up in salad dressing, marinades, granola bars and as an ingredient in (not just on) hamburger buns and baked goods. It may also be found in beauty products such a lip balms and lotions.

 

Our family allergist described sesame seeds as a cousin allergy to the peanut. Individuals allergic to sesame are often also allergic to peanuts and tree nuts.  Like nut allergies, allergic reactions to sesame seeds can be severe with symptoms including difficulty breathing, throat swelling and anaphylaxis. Those with a sesame allergy should carry an epinephrine auto-injector to protect them against accidental exposure.

 

The U.S. Food and Drug Administration (FDA) requires manufacturers to highlight the top eight allergens. Whereas whey, butter and cream must be labeled as “milk” somewhere on an ingredient list, sesame seeds may be listed under a variety of names [see below] including some generic terms like “flavoring,” “spices,” and “seasoning.”

 

If you are allergic to sesame seeds, you may already know to look for some of the following alternative names for them:

  • benne, bene seed, benniseed
  • gingilly, gingilly oil
  • sesamol, sesamolina, sesamum indicum
  • sim sim
  • tahini
  • til
  • vegetable oil
  • natural flavoring
  • spices
  • seasoning

 

When in doubt, call the manufacturer should help determine if a product is allergy safe.


 

Given the dramatic increase in the number of sesame seed allergies in the United States, it may benefit the FDA to get ahead of the trend and follow their counterparts in Canada and Europe by adding a requirement to list sesame seeds as well.