Photo by Rebecca Gould Photography

Wednesday, May 20, 2015

Susan's Read-a-Thon (to Raise Awareness and Money for Research)

In the past eighteen months, Susan has had five anaphylactic reactions to peanut.  I have witnessed four of her reactions, and have supported her as she has self-administered epinephrine during three of them.  Once, I was out of the country. 

Two years ago, I would have told anyone who asked that I “got” the severity of Susan’s food allergies.  

Two years ago, I would have openly shared the ways in which Susan’s life has been limited (despite our best efforts) because of her airborne and contact anaphylaxis to peanut protein.  

Two years ago, I knew Susan was on a short list of potential subjects for the PRROTECT (Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial) study.  

Two years ago, I believed that through participation in the clinical trial, Susan’s life would be dramatically changed for the better.  

Two years ago, I would have said that my greatest hope was that Susan would be freer as the result of the clinical trial.

Now – eighteen months into the PRROTECT study at Ann & Robert H. Lurie Children’s Hospital in Chicago, I have a sobering clarity and understanding of the severity of Susan’s food allergies that I wish I did not have. 

It has become clear in the last year that Susan’s food allergies do not respond as anticipated.  It has become abundantly clear in the past year that while great strides have been made toward viable treatments in food allergy research – there is still immeasurable work to be done – research, studies, clinical trials…

While Susan is now eating – and tolerating – 2000 mg of peanut protein a day, she is a clinical trial “failure” in that she did not reach the desired tolerance of 4000 mg of peanut a day.  Susan does not fit the standard treatment protocol as outlined by the PRROTECT study.  And while I wish it were not so, I have met countless parents over the last year whose children are like Susan – whose food allergies, which set them apart already, are several standard deviations outside the food allergy “norm,” thereby setting them apart even further.

Some people have suggested to me that people like Susan might not ever achieve tolerance -- and that maybe Susan should stop eating peanut...that maybe we should wait for some other form of treatment to become available.  I disagree, and feel strongly that treatment for people like Susan is even more important than treatment for people who have more “typical” (if there even is such a thing) food allergies. 

Dr. Bajowala, a private practitioner who offers oral immunotherapy (OIT) to her patients recently participated in an interview regarding her work.  In answer to a question regarding criterion for selecting OIT candidates based on blood test results and severity of the allergy, she said, “The only criteria for OIT are presence of an IgE-mediated food allergy and commitment to adhering to the protocol…High food-specific IgE is not a deterrent, but may be a criterion for beginning with sublingual lead-in therapy prior to beginning OIT.  There is no such thing as being ‘too allergic.’  In fact, the patients at highest risk of anaphylaxis are the ones who have the most to gain from desensitization.

As scary and unpredictable as eating peanut has been…seeking treatment IS as important as we have always believed it to be.

But there is so much work yet to be done…
And this weekend, Susan wants to do her part in raising awareness and funds for food allergy research.

When Susan, who loves to read, was seven years old – in second grade – she wondered how many minutes she might be able to read in a day.  Susan’s Read-a-Thon to raise money for food allergy research [[(first for the Food Allergy Initiative (FAI) and now for Food Allergy Research & Education (FARE)] was born out of this wonder…and over the years, she and other children living with food allergies have raised thousands of dollars for food allergy research.

Last year, Susan was at a particularly difficult time in the PRROTECT trial.  She was trying to eat peanut, but not tolerating it very well.  She was covered in a fine, hivey rash, nauseous, and exhausted.  Despite valliant efforts early in the day, she eventually essentially abandoned her read-a-thon mid-day, disappointed to admit that she really did not feel well enough even to read – an activity that she loves.

This year, Susan is hoping that those who have followed her journey…those who have read Eating Peanut…
   those who are caring for children with food allergies…
   those who are living with food allergies themselves…
   those who live for the day when there will be viable treatment options for all…
will help her turn her read-a-thon into something…bigger.

Please support Susan – spread the word about Susan's read-a-thonpledge for Susan or one of the other readers, or become a reader (Susan is hoping to have a total of 20 readers!). Becoming a reader is easy – just commit to reading either as much as possible -- or a certain amount (I get that some people don’t actually want to read ALL DAY LONG) on Monday, May 25, 2015.  FARE makes it easy for readers to join – anyone who wants to read will have an individual sponsorship page (get it by clicking JOIN TEAM).  Readers just need to write something about why the read-a-thon is important and send it out to friends, family and other potential sponsors.  Sponsors pledge and make their donation using links on the reader’s individual sponsorship page

1 comment:

  1. You should see Dr. Randhawa in Southern California. His center is physically within a hospital. He has treated over 400 food allergy patients. He has an individualized, yet aggressive and safe approach. He has treated many, many patients who failed clinical trials.