Raising Awareness of Rare Diseases This Saturday

By Kelley Lindberg

There are plenty of times in life when being rare or unique is good. Having a rare artistic talent, for example, is a blessing. Having a rare skill that is in high demand, such as being able to track down security breaches in high-risk networks, provides lucrative prospects. Having a rare ability to choose winning lottery numbers would be especially nice.

But having a rare disease can be a nightmare.

Neither regular doctors nor specialists recognize your symptoms. Even if they do, there may not be enough medical data to tell them how to treat you. You can waste precious years trying to find out what’s wrong, steadily growing sicker as you try one false lead after another. Drugs and treatments, if they exist, are often astronomically expensive. Because it’s so rare, researchers don’t study it, and pharmaceutical companies don’t want to invest the average $1.5 billion it takes to bring a drug to market when they know only a handful of patients will ever pay for it. You feel like a guinea pig that doctors are just throwing darts at, day in and day out. And in some cases, you feel like you’re perched on the ragged edge of disaster every day.

My sister-in-law, Jennifer, has just such a disease. Hers is called MonoMAC, and doctors only know of 25 other people who’ve ever had this disease. You can read more about her here.

That’s why I’m happy to help spread the word about “Rare Disease Day,” which is the last day of February every year. That’s this Saturday, and the organization called Utah Rare is holding a half-day Rare Disease Day Symposium in Salt Lake City (with a wonderful array of speakers) to help spread awareness among the public as well as among policy makers, public authorities, industry representatives, researchers, and health professionals. The Saturday symposium is being modeled after the popular TED Talks, and it will be live-streamed and recorded.

In addition, Utah Rare will be holding a Rare Disease Day State House Event at the State Capitol Building Rotunda in Salt Lake City this Friday, from 3:00 – 5:00pm to reach legislators, legislative staff, the public, and the media.

Rare Disease Day isn’t just a Utah event—84 countries around the world participated in Rare Disease Day events last year.

Here are the details for the Saturday event:

• Utah Rare Disease Day Symposium
• Saturday, Feb 28, 2015
• 12:00pm – 5:00pm (MST)
• Eccles  Health Services Education Building, 26 S. 2000 E, Salt Lake City, UT 84112
• Tickets: Free! But you need a ticket, so order them online at Utah Rare Disease Day Symposium

Confirmed speakers for the Saturday Symposium include:

• Dr. Dean Li, Associate Vice President for Research and Chief Scientific Officer for University of Utah Health Sciences
• Dr. Ed Clark, Chief Medical Officer of Primary Children’s Hospital and Chair of Pediatrics
• Dr. Kevin Jones, Professor and Author of “What Doctors Cannot Tell You”
• Dr. Gholson Lyon, Cold Spring Harbor Laboratory and Utah Foundation for Biomedical Research
• Dr. Reid Robison, Chief Executive Officer of Tute Genomics
• Dr. Robert Selliah, Chief Executive Officer of American Med Chem
• Dr. Christopher Gibson, Chief Executive Officer of Recursion Pharmaceuticals
• Crystal Shearman, producer of “Undiagnosed: Medical Refugees” film
• Gina Szjanuk, Founder of Rare and Undiagnosed Network
• Season Atwater, Founder of Aware of Angels

Come learn about rare diseases and the impact they can have not just on individuals, but on the community around them, and learn what’s being done to address these heart-breaking issues.

And if you happen to have a rare disease, know that events like this are going on all over the world this Saturday, and we’re all standing beside you.

Zoe’s Silver Award Girl Scout Project

By Kelley Lindberg

After taking off a few weeks for the holidays, it’s time to jump back in to my blog. Today I’m excited to welcome a special guest blogger, Zoe, who has just completed a wonderful project for her Girl Scout Silver Award. Thanks, Zoe!

Hi, I am Zoe, and I am a 13-year-old Girl Scout. In Girl Scouts there is a project that Cadettes do called a Silver Award. For my Silver Award I wanted to spread awareness about food allergies and anaphylactic shock, because my 7-year-old sister has a peanut allergy, and not many people know what that is or what to do if she ever eats a peanut. So if you do not know what anaphylaxis is, it is a life-threatening food allergy reaction that happens when you eat your allergen.

To start spreading awareness I came up with the idea to do an information booth. I have done them at schools and booth events. So far I have done 6 booths and they have all gone very well. At those booths I wanted to see what the general public knows about food allergies, so I found a little survey. Here are the results.

I found this survey at the AllergyHome website, http://www.allergyhome.org/testyourknowledge, and used it for my questions.

1. True or False? You will experience anaphylaxis if the food that you are allergic to touches your skin.

7/16 said true

8/16 said false

1 said half/half

The answer is it really depends. Studies suggest that skin contact alone seldom causes anaphylactic reactions, unless the allergen is somehow transferred to the mouth, eyes, or nose. In addition, reactions can change drastically with each exposure, so don’t assume you won’t have an anaphylactic reaction next time just because your last reaction was mild.

2. True or False? Using hand-sanitizing gels (like Purell) is a good way to clean your hands of food allergens?

2/16 said true

14/16 said false

The answer is no, hand sanitizers just spread the allergens around but do not kill them. Studies show soap and water is the best way to remove food allergens. If soap and water are not available, a wet wipe is the second-best choice.

3. True or False? The smell of peanut butter will cause an allergic reaction in people with peanut allergies.

11/16 said true

4/16 said false

1/16 said it depends

The answer is it does depend how allergic they are to it. The smell alone does not contain the proteins that cause reactions. However, if peanut dust or powder is floating in the room (or airplane, for example), that dust or powder may contain the protein and can cause a reaction in sensitive people.

4. True or False? You can have an allergic reaction if you share your friend’s water bottle.

12/16 said true

4/16 said false

The answer is yes you can and most likely will have an allergic reaction. Sharing anything that could transfer saliva (forks, cups, bites of each other’s food, etc.) is a bad idea.

5. True or False? Washing a table with a Clorox wipe can be enough to clean a food allergen from the table?

9/16 said true

7/16 said false

The answer is True. Common household cleaners are effective at removing allergens if they are used carefully and thoroughly on the table.

6. True or False? If someone eats a food you are allergic to and then kisses you on the cheek, you will have a serious (i.e., anaphylactic) reaction.

5/16 said true

11/16 said false

The answer is it depends. In most cases, reactions to a kiss on the cheek are mild, such as a rash. But anaphylactic reactions have been reported, and kisses on the lips are more likely to cause serious reactions because of the possibility of ingesting the allergen after the kiss.

7. True or False? If you have ordered food at a restaurant and didn’t have a reaction in the past, will you be safe if you order the same food again?

2/16 said true

14/16 said false

The answer is False because of the possibility of cross contamination. Always tell your server about your allergies and ask them to double-check ingredients and verify the food handling for your meal.

8. True or False? Benadryl should be given first for a serious allergic reaction?

8/16 said true

8/16 said false

The answer is False. An EpiPen or other epinephrine autoinjector always comes first.

9. True or False? The needle in the Epipen or Twinject is long?

2/16 said true

14/16 said false

The answer is False. Needles in epinephrine autoinjectors are only about a half-inch long.

For my overall experience it was very good. I met many interesting and nice people. I learned a lot of things that I did not know before. And I had a lot of fun doing it! And a special thanks to everyone that helped me with the surveys.

                                                                                                            - Zoe

(And special thanks to Dr. John Lee at www.AllergyHome.org for giving us permission to reprint their survey here.)

American Girl®’s Allergy-Free Lunch

by Kelley Lindberg


Depending on the statistics you read, food allergies affect anywhere between 1 in 12 and 1 in 25 kids these days. They have, unfortunately, become so common that almost every classroom, soccer team, scout troop, or summer camp has at least one kid with an allergy.

Because of the tireless work of folks like the Food Allergy and Anaphylaxis Network, Kids With Food Allergies, the Utah Food Allergy Network, and the dozens of organizations and hundreds of bloggers that have surfaced over the last decade, more people are aware of food allergies than ever before in history.

And here is a sign that not only is awareness rising, but there is a genuine effort to reach out to adults and children with food allergies. American Girl®, the maker of those wildly popular dolls, has just come out with the ultimate accessory set for any food-allergic girl:
The American Girl® Allergy-Free Lunch!

Now your American Girl® doll can indulge in a make-believe lunch that is allergy free. The set contains plastic play-food that represents food items that are free from the top 8 allergens. It includes a fake berry smoothie, a container of vegetables, and two “sandwich skewers.” Even better, it also comes with a medical bracelet for the doll, allergy stickers, and even a fake allergic epinephrine “shot” in case the doll has a pretend reaction. The whole thing comes in a fabric lunch bag.

I think it’s great that this has come out just in time for back-to-school shopping. If you’ve got a food allergic first-grader who is a little nervous about carrying her lunch to school this fall, this could be a perfect “get ready for school” gift. Or just a “thanks for being strong” gift. Or a “because I love you” gift. Or do you really need a reason?

But it’s not just for food-allergic girls. This lunch set might make a great birthday present for a food-allergic girl’s best friend. She would see that food is still yummy (and fun!) no matter what, and that it’s easy to keep her allergic friend safe by choosing non-allergic foods. And the fake epi-shot will remind her how serious it is, so that maybe she’ll take even more interest in being a helpful friend.

Obviously, my teenage son is not interested in this innovation, so I guess I won’t be buying it. But I sincerely appreciate American Girl® for taking this progressive step in constructive, positive, self-esteem-building play. I know a lot of girls will love this new accessory for their favorite doll.

Celebrate Food Allergy Awareness Week

by Kelley Lindberg


Next week is Food Allergy Awareness Week, from May 13 – 19, 2012. It’s a great time to help educate everyone you meet about the seriousness of food allergies. It’s also a great time to appreciate how much awareness the food allergy community has managed to spread over the last fourteen years, since the Food Allergy and Anaphylaxis Network (FAAN) created the very first Food Allergy Awareness Week in 1998.

When my son was born (in that same year, in fact), I was oblivious about food allergies. A year and a half later, I was painfully yanked into the food allergy world after my son’s first encounters with peanut butter left him with rashes and a hoarse voice. Fortunately, I found a friend whose son was also newly diagnosed with food allergies. Then we both discovered FAAN. Together, my friend and I began the long process of educating ourselves, and continuing to educate ourselves as new information becomes available.

There wasn’t much help back then. Restaurants were clueless, schools were barely aware, and resources were slim.

Now, just fourteen years later, restaurants offer food-allergy menus, schools are beginning to adopt written policies, and FAAN has been joined by a host of other food-allergy resources online, including our very own Utah Food Allergy Network (UFAN), which began 5 years ago. There are cookbooks, and websites, and support groups, and an entire community that I am so very grateful for.

So, if you have a minute, think about ways you can celebrate Food Allergy Awareness Week and the awareness we’ve all had a hand in spreading. Can you do a storytime at your library, and read a children’s book about food allergies? (There are a lot of them out there now.) Can you speak to your child’s class about food allergies? Maybe you can donate some jars of Sunbutter to the local food bank, or send a quick note to the manager of your favorite grocery store, thanking them for carrying specific brands or items that are safe for your food-allergic family member.

The tiniest efforts can reap huge rewards down the road. Just look what we’ve done in fourteen years.

And don’t forget to register for UFAN’s Day of Play at the Discovery Gateway Children’s Museum on Tuesday, May 14 from 4 – 6 pm, to help create an artpiece to be displayed at the new Sunflower Market Downtown. But hurry! You have to register and buy your discount tickets for this fun event by May 10. Go to the UFAN website for details.

Food Allergy Awareness Week, May 8-14, 2011

by Kelley Lindberg


Welcome to Food Allergy Awareness Week!

It seems like everyone is raising awareness these days, about one cause or another. After a while, it can start to feel a little boring – gee, another week, another cause. Do we really need to be “aware” of all these things?

Well, yeah. I think we do.

When I was younger (at least a hundred years ago, it seems), no one knew much about anything. Food allergies? I didn’t know anyone who had them. Autism? Never heard of it. Heart disease in women? Nah – only men got heart attacks, right? Breast cancer? I didn’t know about it until my beloved grandmother suddenly got it and died, leaving me devastated. Disabilities? Why should we make businesses, homes, and retail stores accessible to people in wheelchairs – do they spend money, crave social activities, and want to enjoy life, too? Depression? That was something you were supposed to either snap out of or take Valium for, but it was all in your head anyway, so just stop feeling sorry for yourself.

Awareness. In the last twenty years, we’ve all become a lot more aware of a lot of things, and not just because we became grownups, either. We began to talk about things that had been taboo before. Individuals got tired of reinventing the wheel when their child or loved one was diagnosed with a scary condition, and they began to band together, to seek each other out, to build campaigns to teach the rest of the world what it is like be them. And we learned something… we learned that everyone is the same the world over, we all have challenges, and often it doesn’t take a lot of effort to understand each other and make the world a little easier for us all to live in together.

Food allergy awareness has blossomed in the last eleven years since my son was diagnosed. Back then, restaurants were clueless, teachers were scared and/or skeptical, and patients and their families felt isolated.

A decade later, through the tireless efforts of organizations like the Food Allergy and Anaphylaxis Network (FAAN), Kids With Food Allergies, and the Utah Food Allergy Network (UFAN) it’s already a new and more tolerant environment for my son. His school has implemented food allergy policies. Teammates on his sports teams have had allergies, too, so the coaches are clued in. Restaurants bring him special menus. There have been television shows, magazine and newspaper articles, and dozens of books produced to teach everyone about food allergies.

Awareness – just that, just being aware – has made the world a lot safer for my son and the other 12 million Americans who have food allergies. Sure, there are still dangers, still people who don’t “get it,” and still situations that put him at risk, but every year those dangers are being minimized by other people – friends, family, or total strangers – who understand how serious food allergies are and are willing to take an extra step or two to keep him safe.

So I’m thrilled to help celebrate Food Allergy Awareness Week, and I hope you’ll join me in helping to spread the word. It doesn’t take much:

• Talk to someone about food allergies.
• Give a short presentation to your kid’s class about allergies.
• Read a food allergy book for your local library’s story time.
• Ask a restaurant how they handle food allergies.
• Donate allergen-free food to your local food bank (Sunbutter, WowButter, gluten-free pasta, Enjoy Life granola bars, etc., all make great donations).
• Make a cash donation to UFAN or FAAN to help further education, advocacy, and research.

UFAN has a whole week’s worth of great ideas for celebrating FAAW, including signing up for the Food Allergy Walk in October, so check it out at http://www.utahfoodallergy.org/. Or go to FAAN’s website to see their ideas: http://www.foodallergy.org/.

Whatever you do, no matter how small, know that you’re making a difference in someone’s life this week. Thank you!

Continuing to Raise Food Allergy Awareness

by Kelley Lindberg


Food Allergy Awareness Week was May 9 – 15. People all over the country participated in many ways – giving presentations to schools, making videos, reading food allergy books at library story-times, writing to their elected officials to support more funding, and so on. It was an exciting week!

But just because Food Allergy Awareness Week is over, that doesn’t mean we don’t spend the other 51 weeks of the year raising awareness, too. For most of us, it's a daily, ongoing educational process, teaching the people around us and our children what it means to live with food allergies. The more people understand how dangerous, pervasive, and common food allergies are, the better life will be for those who are food allergic.

To continue raising awareness about the danger of food allergies, the Food Allergy Initiative has created a video that punches home a single, critical idea:

Every 15 minutes, a child is rushed to the emergency room because of food allergies.

Watch the Food Allergy Initiative’s video here. It’s jarring. It’s emotional. It’s surprising. And it just might get through to some of those folks out there who don’t always seem to “get it.” (You know, the in-laws who think you’re making it up, or the aunt who just can’t seem to leave her favorite nut-covered cheese ball home at family parties.) Give it a look, then pass it on.

And keep spreading awareness. An aware society is a safer society.

That’s good for all of us.

Reaping More Awareness

You know something’s gone mainstream when it starts showing up in TV shows, not as a pivotal plot point, but as a throw-away dialogue line.

Last night, I was watching an episode of Reaper. (Granted, it was about six weeks old – I’m woefully behind on my DVR.) In this episode, Sam (the main character) doesn’t know his girlfriend has found out that his biological father just happens to be Satan. She accosts him and demands to know if there’s “anything you want to tell me.”

Sam, looking confused and contrite, offers, “I’m allergic to tree nuts?”

It wasn’t even a punchline to a joke. It was just a bit of dialogue that allowed him to attempt to elude the girlfriend for another second or two. And in the great scale of evils, being allergic to tree nuts didn’t even make the girlfriend blink – not when it was measured against being the son of the devil. Go figure.

What does this mean? Simply that food allergies have become so common that just about everyone knows about them and knows someone with them, so that a TV show can mention food allergies off-the-cuff and no one is left scratching their heads.

Just try doing that ten years ago. More than half the audience would have been saying, “Allergic to tree nuts? What’s that all about?”

This is, of course, good news. Wide-spread awareness is the first major step towards a cure for any illness – the more people understand the illness, the more likely they are to discover it early enough in themselves to treat, the more likely they are to support friends and family who get the illness, and the more likely they are to support research and treatment funding. Just look what’s happened with breast cancer, Alzheimer’s, and even erectile dysfunction.

Okay, maybe I’m overanalyzing a silly television show. But it made me smile to think that the writers of Reaper are aware of food allergies and aren’t above spreading a little more awareness themselves. Every little bit helps.

I always have liked that show!

Monday, Monday

Monday morning. The weekend’s over. That means we’re back into the daily melee of packing the school lunch, finding the matching socks, flattening the wild bed-head hair so he doesn’t frighten the teachers, reloading the backpack, listening for the carpool honk.

It’s also milk delivery day. I order milk, eggs, and bread from a local dairy because they’re hormone-free (the milk and eggs, that is, not the dairy employees). It’s more expensive, but it makes me feel like I’m doing something healthy for my family. Gotta counter-act the PopTarts and drive-thru burgers somehow!

Over the last couple of years, this dairy has been turning into a grocery store on wheels. They keep adding food to their available stock. First, it was fruit juices and yogurts. Then they added fresh produce. Over the last year, they’ve been adding hormone-free meats (tempting, but way out of my weekly grocery budget because it’s so much more expensive than grocery store choices), as well as Italian and Mexican food, such as pasta sauces and tamales. Last week, I noticed they added coffee beans. (What ARE they feeding those cows, anyway?)

This morning, I got an email survey from them, asking about more food choices and how likely I’d be to purchase them from the dairy. The interesting thing was that the very first question was something like “What dietary choices do you make when buying food for your family?” The options I could check included “Allergy: Nuts,” “Allergy: Milk,” and “Allergy: Wheat,” along with things like “Low Fat” and “Diabetic.”

Food allergy awareness! Yippee!

Five years ago, I felt like Kim and I were the only people in Utah who knew about food allergies. Now I find allergy warnings and information on restaurant menus, door signs at fast food joints, food packaging, and now even consumer surveys!

This makes me happy because… well, you know. I’m selfish. I want everyone to know about allergies so that it will make my son’s life (and mine) easier.

But all this food allergy awareness also makes me sad because… it means a lot more kids have food allergies. I wouldn’t wish that on anyone. But it’s a fact of life nowadays, so there you go.

At our support group meeting last Wednesday, a new mom came. (New to allergies, I mean, not new to being a mom! I’ve really got to learn to be more specific.) She’d recently discovered her child was allergic to nuts, and she was having a hard time dealing with it because she felt so overwhelmed and alone. She seemed quite glad to find us, and we welcomed her into the “club” with open arms and hopefully enough encouragement and information to help get her through this tough adjustment period.

As hard as it is for anyone to learn they’ve got to deal with allergies, I am so glad that for this mom, life will be just a little easier than it would have been 5 years ago, because awareness is rising. And it’s because of a million other ordinary moms and dads just like us, all across the country, who are quietly having to explain to teachers, relatives, neighbors, restaurant managers, and babysitters that food allergies have to be understood and accommodated.

Amazing what we everyday folk can do, isn’t it? After all that, surviving a Monday morning is a piece of (allergen-free) cake.