Talking Allergies

Here is the letter Sara sent to Chatelaine's editor.
You can also see a pdf of it on Anaphylaxis Canada's site here: http://www.anaphylaxis.org/content/what ... topics.asp

By email – November 16, 2009

To: Ms. Maryam Sanati, Editor-in-chief, Chatelaine
Ms. Patricia Pearson, Writer

Re: Chatelaine article “It’s just nuts”

I hope you received the “Sabrina’s Law” documentary about my daughter who died in 2003 at the age of 13 after
suffering a fatal allergic reaction. I sent two copies a couple of weeks ago, to the attention of Ms. Sanati, after reading
the article “It’s just nuts” which was in the December issue of Chatelaine magazine.

I was completely disheartened by the lack of empathy, sarcastic tone, ridiculous comparisons, and missing facts. I was especially concerned that readers would be left with the impression that the piece was well-researched and painted an accurate picture of
what’s going on in Canadian schools and the wider community. It is far from the truth. You say that “schools and
parents are cowering in fear” yet in my travels across North America, I have seen schools working together to keep all
children safe.

I wish you had known my beautiful daughter, Sabrina, and I wish I were writing to you today for another reason.
Instead, I am writing in hope that you will join me in keeping my promise to my daughter: to educate. While she was
on life-support, I told Sabrina that I would do everything possible to prevent a similar tragedy from happening to
another family or child.

Had my daughter been alive today, and read “It’s just nuts”, she too, like many of your readers,
would have been dismayed by such a heartless article. She would have been very disappointed by
the adults who wrote and published this piece. She would have told you that children deserve the
support of their communities. At the tender age of 10, Sabrina made a radio documentary for CBC
Outfront with my sister, Kathleen Whelan, called “A nutty tale”. Please listen to it -
http://www.cbc.ca/outfront/webfeatures/sabrina/sab_shell.html

You will hear the voice of a creative and knowledgeable youngster using humour, not mockery, to advocate for those
at risk of anaphylaxis. It has been listened to around the world and used as a teaching tool. You can tell from her
voice that Sabrina did not let her allergies define her, though she did work hard to self-protect and teach others.
Today, she may have been a talented writer contributing articles to Chatelaine magazine.

Ms. Pearson is correct in suggesting that peanut allergy has had greater attention from schools and the public in
general. This is due to the fact that peanut is one of the most common causes of allergic reactions and death from
anaphylaxis. It is also one of the most reported allergies within the school system. Ask any principal. While I agree
that more needs to be done to educate the public about other food allergens, “It’s just nuts” failed in its attempt to
provide any clarity around food allergy, a complex health issue. In fact, it did more to confuse your readers. The
article suggests that food allergies are a myth and there is “over-blown panic” within the community; that parents and
schools are “over-reacting” in their efforts to protect kids with food allergies.

It is easy to be an armchair critic about the way others manage a health condition when you do not live with it 24/7. While my daughter ended up being one of the few who died from an allergic reaction, my hope is that you’ll see her as more than just a statistic.

Mother-to-mother, let me share Sabrina’s story.

Sabrina’s death from anaphylaxis, while rare, has nothing to do with death from lightning strikes. I found this
comparison hugely offensive and ask that you please be considerate of people who have lost children as a result of
anaphylaxis. As mothers yourselves, I hope that you would both understand how awful it is to lose a precious child. I
cannot describe the devastation that Sabrina’s death caused to my family, her many friends, and her classmates who
witnessed the horror of seeing their friend die. Sabrina was my only child.

Unlike lightning strikes, anaphylaxis is not an unpredictable force of nature. Prevention and safety plans can and
should be put in place. Knowledge goes a long way to keeping children safe and they have the right to be safe and
feel safe while at school. That is what Sabrina’s Law is about. I remember feeling very strongly after Sabrina’s death
that if all of the right measures had been in place – epinephrine, emergency preparedness and, 911 – maybe she
would be alive today. My sentiments were echoed by Dr. Andrew McCallum, then Regional Supervising Coroner for
Eastern Ontario, who sent recommendations to the schools in Eastern Ontario.

Ms. Pearson, my daughter (like most food-allergic kids) knew enough not to “lick her desk” but that peanut and other
food particles could trigger a reaction if there was a transfer of residue from hand to mouth or from a utensil. The day
she died, she ate plain French fries thought to be safe, which had been contaminated by a small amount of dairy not
visible to the eye. Tongs which had been used to serve her fries had previously been used to serve French fries with
poutine. Without early treatment with epinephrine, her allergic reaction to dairy escalated quickly, causing her throat
to close and shut off oxygen to her brain. She was unconscious within minutes. After a day on life-support at the
Children’s Hospital of Eastern Ontario, Sabrina died, surrounded by people who loved her very much. My worst
nightmare had come true.

As the author of “It’s Just Nuts” Ms. Pearson, you hold the power of the pen to share your views as a freelance writer.
Please use it responsibly. Ms. Sanati, as the Editor-in-chief of Chatelaine, you have the ability to reach millions of
people with the right facts, by choosing what goes into print. Instead of creating controversy, let’s try to build bridges,
not walls.

I am sharing my letter with Sabrina’s father, Mike Shannon, and the many others I have had the privilege of meeting
since Sabrina’s death. These individuals have made efforts to improve management plans in schools, create safer
products and environments for those at risk of anaphylaxis, and increase public awareness.

They are school communities, politicians (Premier Dalton McGuinty, Kathleen Wynne, Minister of Education, Cheryl Gallant, MP
Renfrew-Nipissing-Pembroke, Gerard Kennedy, MP Parkdale-High Park (former Ontario Education Minister), Dave
Levac, MPP Brant, John Yakabuski, MPP Renfrew-Nipissing-Pembroke); government representatives (Health
Canada, Canadian Food Inspection Agency, and Veterans Affairs Canada); the allergy and medical community
(Canadian Society of Allergy and Clinical Immunology, AllerGen, Anaphylaxis Canada, Allergy/Asthma Information
Association, Association québécoise des allergies alimentaires, Canadian MedicAlert Foundation, Food Allergy &
Anaphylaxis Network, Food Allergy Initiative/Robert Kennedy Jr., Allergic Living magazine, Niagara Anaphylaxis
Support & Knowledge and other local support groups, CHEO); industry (King Pharmaceuticals Canada, Paladin Labs,
food manufacturers, Canadian Peanut Bureau, Dairy Farmers of Canada, Egg Farmers of Canada); and Canadian
and American documentary producers (Lank/Beach Productions, The National Film Board of Canada, Merit Motion
Productions, Sharona Schwartz, and Dr. Sanjay Gupta).

Though the article failed to recognize the important work of this wider community over the years, I continue to appreciate the progress that has been made by these organizations and others, too many to mention here. It is too bad that Chatelaine chose to omit many of the good
news stories. Clearly, more work needs to be done to increase Chatelaine’s understanding of the efforts of such a diverse group, all focused on a common goal: protection of people with severe allergies, especially children.

In closing, I would ask that Rogers, the publishers of Chatelaine magazine, to consider the impact of articles such as
“It’s just nuts”. You have a moral obligation to provide balance and proper facts when highlighting children’s health
issues. I urge you to publish another article on food allergy, this time with accurate information and in a respectful
way.

I will follow up with you by phone within a week as I would really like to speak with you, Ms. Sanati. I have learned
from experience that by talking, misunderstandings and misinformation can be clarified. Now, more than ever, I would
like to offer my continued support in educating.

Sincerely,

Sara Shannon
Sabrina’s Mom & Allergy Advocate

cc: Mr. Brian Segal, President & CEO, Ms. Kerry Mitchell, Vice-President and Publisher, Consumer Publishing

*Bolding added by Gwen S.

Sara's letter brought me to tears. She is a truly remarkable woman -so brave to continue to tell her difficult story and to work so hard to make a difference for all of our children and all people with allergies. A real hero.

How can Chatelaine continue to ignore us?

I am thinking that I will send a copy of the letters by Anaphylaxis Canada and Sara Shannon to my school board. I was part of the committee which developed our new anaphylaxis policy after Sabrina's law was passed so I know the process that we sent through to develop it. It might be handy for them to have accurate information on hand in case backlash issues arise in schools as a result of this article. Principals might not be able to rebut the Chatelaine article without the other side of the story and these 2 letters do it so well.

Did anyone notice Chatelaine's post to in response to the comments about the article? It almost appears as though they are quite proud of themselves and all of the hype they've managed to achieve.

http://en.chatelaine.com/english/weeken ... 50000_0023

Over the last several weeks, Chatelaine has received an unprecedented volume of responses to Patricia Pearson’s December feature story, “It’s Just Nuts,” which follows here.

We welcome, and read carefully, each comment to this article. Our editors have created this venue on Chatelaine.com to hear your voices on this important issue. We plan to publish more reaction in our January edition of Chatelaine .

Chatelaine knows that food allergies can be both serious and deadly, and this is a reality for many Canadians, and, in fact, many of our readers.

Above all, Chatelaine welcomes the national discussion this story has generated. This is a conversation that many Canadians are already having and many more want to have.

Maryam Sanati
Editor-in-chief
Chatelaine

You mean the reasoned, thorough discussion the rest of us have already take part in for a decade - that Maryam and Patricia P. completely missed? Is that the discussion? The one they'd like to make us go through again, just so they can feel vindicated for running this one-sided, distorted article. And how nice that they keep reposting links to their negative article, so that yet more people won't have the real facts on which to come to a conclusion.

Where were these two when the coroner on Sabrina's case came forward with his recommendations, which Sara mentions. Or when people were testifying to the facts surrounding food allergies in the schools in a committee of the Ontario legislature.

Where is their sense of community responsibility? Do they really think this is just about them and generating discussion? How appalling.

Well, hooray, some better news.

CTV.ca has run this article:

Groups blast article that downplays food allergies

http://bit.ly/3cyXzT

How nice that someone gets that a minority representing a serious medical condition might merit being treated seriously.

Let us know here if you've sent a letter to the Rogers execs. as Sara Shannon asks on the previous page.

It would be interesting to hear. Gwen

Done -copy of our letter to the editor copied to the execs. I also emailed our board to give them a heads up in case any issues surface in schools from parents. I know the communications person at our board office. I sent copies of the letters from Laurie Harada and Sara Shannon as well for their information.

What a wonderful and heartbreaking letter from Sara Shannon. But that it had to be written at all makes me angry.

Any views on whether the Chatelaine article could lead to potential harm/damages caused by discrimination? In the U.S., I could see similar articles leading to class action lawsuits, but who knows? I'm not in that field. Even the article's title seems to label parents as insane (i.e., "nuts") as opposed to legitimately concerned. Is that not discriminatory?

Were this an article in response to school accommodations for children with developmental delays, suggesting that worried parents were insane, I wonder what the response would be.

Dear Mr. Segal,

Thank you for your expedient response.

I am not happy with what Maryam Sanati/Chatelaine is offering to do. We have worked very hard for years to raise awareness so that others do not think we are hysterical or as Maryam put it on a Halifax radio station "parenting by panic". The damage this article has done is tremendous.
This article is not only biased but it is full of inaccuracies. Now we have cynics taking Patricia Pearson research as fact.
If you are truly remorseful for what has happened then publish an article where medical professionals are interviewed (and not misquoted). Talk to families of anaphylactic children, talk to schools about their emergency plans, talk to the children who have had severe reactions and focus on the many compassionate people in our lives who help our children stay safe. There is such a wonderful positive side to this story

My daughter is now 12 years old and I must admit when we found out she had nut and peanuts allergies at the age of two years old, we were in a state of panic. I did not know how to explain her medical condition and because the awareness was not there, the support was not there either. This caused anxiety for us and was extremely stressful. There definitely are parents who are a little over the top but this is out of fear and anxiety. There are many parents who are not given the information they need and either are too complacent or too stringent. This is another reason why awareness is so important.

Over the years, I have learnt how to educate staff, parents and students about allergies. My daughter has multiple anaphylactic allergies. I make everything fresh at home and we don't take chances. I am not hysterical neither is my daughter. This is our normal and if you read her article you will see she is a well adjusted, compassionate young lady.

Since this article, my daughter has been approached by other students asking why they are not allowed to bring peanut butter and nuts to school after all when she is in high school she will be around nuts all the time. The bullying these kids go through is unreal. My daughter has been chased by a peanut butter sandwich in the past, she has been told to eat peanut butter, this article did not help at all. Unlike high school, most elementary schools do not have a cafeteria so the students eat in the classroom. This is why a restriction needs to be in place.

Again, there is so much more to this topic. Printing the responses to the article is a good idea but it still does not present all the accurate facts if you do not speak with the medical professionals, the school staff and the families affected by this. We have so many terrible things to face in this day and age, we should focus on human kindness.

--------------------------------------------------------------------------------
CC: Ken.Whyte@rci.rogers.com; Maryam.Sanati@rci.rogers.com


Dear Ms. DaCunha,

Thank-you for your e-mail about the article on peanut allergies in Chatelaine. We have received angry feedback from many readers and family members of children with allergies. I am personally sorry for the additional anxiety that the article has caused you.
I know that food allergies can be both serious and deadly, and that this is a reality for many Canadians, and in fact, many of our readers. I live with the realities of anaphylaxis in my own family and I don't like to see them minimized in any way as I believe was done in this article.

I strongly disagree with many aspects of Patricia Pearson's article, and share your disappointment at the lack of balance on this critical and often life threatening issue. However, it is important to note that Rogers Publishing allows its magazines all due editorial freedoms and individual authors are permitted to take stands on sensitive issues. While Ms. Pearson relies heavily on the work of reputable researchers and she does acknowledge the painful burdens of parents of children who suffer these allergies, I do agree that she overlooks some very important aspects of the research studies she cites.

Chatelaine recognizes that Ms. Pearson's views are not the last word on this story. For this reason, the magazine has decided to run an extended Letters section in its next issue to ensure that other points of view are given full and fair expression. The magazine's Editor, Maryam Sanati, informs me she will also be addressing these issues in her monthly Editor's Letter. I have asked that many of the valid counter-arguments to Ms. Pearson's thesis be prominently presented in the next issue of Chatelaine. Well over 300 letters and comments are already posted on Chatelaine.com.

Thank-you again for taking the time to write me on this matter and please accept my assurance that your concerns have not only been heard but in my case, they are also shared.

Sincerely,
Brian Segal,
President and CEO
Rogers Publishing Limited

Great reply Pamela, you're right. Should be more than a few letters and an Editor's letter.

Encouraging response that you and others and getting from Mr. Segal, though. This is the first time in more than a month that somebody related to the magazine has responded with some compassion and understanding. (Kate first told us about this article - and gave this thread its title - on Oct. 8.)

I note:


See editor of Chatelaine - you can't just disparage people with allergies (or with relatives with allergies) as hysterical ninnies, we really are everywhere.


Yes, like completely missing the statistics showing the doubling of food allergies / peanut allergies. One of the reputable researchers the writer quoted, Dr. Susan Waserman, found this article riddled with problems.


Close to 400 last our office manager looked, fyi. Let's hope, as Pamela says in her reply, that Chatelaine does come through with decent coverage of the facts about food allergies and school accommodations. FYI, I won't say of the "other side," it's not.

Rogers execs. to meet with Anaphylaxis Canada on Friday following the enormous outpouring from the allergy community.

Kudos to Sara Shannon for her powerful letter. And frankly to everyone on this Forum and on Ana. Can's registry for all their letters and insistence that this negative article can't be the last word. Let's hope a fair and accurate follow article with be forthcoming.

This is attached to articel now

reply to letter:

That just strikes me as a really smarmy response...especially with the big jar of peanut butter and the title "Is it Just Nuts - the reaction to the article" .

Anyway, if she is welcoming the discussion, I suggest we keep discussing it and I suggest ccing all the management on every comment. The last post is heart-breaking about the little guy who got beaten up on his bus.