Working for Allergy Awareness!
For children with food allergies, “a normal childhood” can be difficult. It is also something that many parents try desperately to provide. That is easier said than done. From diligently examining ingredient listings, to educating friends, family and school officials about their children’s specific allergies and treatment, it can be challenging. It also requires enlisting the children early on to become their own advocate because Mom or Dad will not always be there. That is the wonderful story of Maya Konoff and her mom Jill Mindlin. Since her young daughter was learning to read a list of ingredients, Jill was educating and advocating for Maya and others about food allergies. Maya has learned those lessons; she has succeeded in becoming a strong advocate for young people with food allergies. Read their amazing story here.
Maya Konoff and Her Mom Jill Mindlin Talk Anaphylaxis, Advocacy and Living Each Day to the Fullest
By Kristen Stewart
August 17th, 2020
"Read the 'gredients" was one of the first full sentences Maya Konoff spoke as a toddler over 15 years ago — and it was just the beginning of the lifelong advocacy she and her mother Jill Mindlin have undertaken for herself and others after she was diagnosed with severe food allergies at nine months old.
Maya had many serious reactions particularly between the ages of 1 and 4 and was diagnosed as allergic to all dairy, eggs, peanuts, tree nuts, sesame, shellfish, peaches and mustard. Naturally Jill found this scary and stressful but rather than becoming overwhelmed she got to work. She vowed to protect her daughter — and to not let her miss out on anything just because of her food allergies.
"It involved a tremendous amount of work," Jill says. "I really worked part time my whole career because I always said my first job was keeping her safe. My second job was practicing law."
While some parents go the route of saying no to particular activities in order to avoid possible exposure to allergens, Jill took the opposite approach. She believed anything they wanted to do was possible. It just took a good dose of advanced preparation.
The mother-daughter duo joke Maya's older brother was the "starter kid" and as he began each new school Jill met with officials to tell them about her daughter who would be coming two years later so that they had everything in place to keep her safe by the time she arrived.
Similarly, going to a friend's house meant Jill coordinating with the other parents to make sure they were comfortable, that they knew where Maya's EpiPen was and how to use it. Eating out was something planned beforehand involving a phone call to the restaurant. When Maya was invited to a birthday party at a cooking place Jill visited in advance to talk to them and determine how they could work together to make the activity safe for her daughter.
It took a lot of time and effort but Jill succeeded in providing her daughter with what Maya calls a "normal" childhood. Now a rising sophomore at Syracuse University, Maya fondly remembers participating in everything from typical everyday activities to a trip to China with a music group. "I wouldn't say I had a different childhood other than that I had this extra thing I had to worry about," she says.
While in most ways their family life was normal, in others it was extraordinary. When Maya was five, she and her mother took their first trip to Washington, DC where she and other children spoke to legislators about their severe allergies.
From the beginning Jill has been involved in advocacy in a number of ways. Almost twenty years ago she and a friend who also has a child with severe food allergies began the Food Allergy Support and Education Group which still exists today. She has also worked with a number of not-for-profit organizations including the Food Allergy & Anaphylaxis Network and the Food Allergy Initiative (which eventually combined to become FARE—Food Allergy Research & Education) and FAACT (the Food Allergy & Anaphylaxis Connection Team) where Maya also volunteers at conferences and mentors younger teens.
Jill wanted to use her talents to help Maya and others like her. As an attorney she was naturally drawn to advocacy and particularly advocating for children with food allergies in school. Over the years she has worked on the Food Allergy and Anaphylaxis Management Act to help prepare schools on how to manage kids with anaphylaxis. She has also helped develop many sets of guidelines on how best to care for children with food allergies in schools beginning with her town, school district, county and state (helping to pass the Food Allergy and Anaphylaxis Management Act) and ultimately culminating in her work helping on the CDC’s Voluntary Guidelines For Managing Food Allergies in Schools and Early Care and Education Programs. In addition, she helped with several pieces of legislation related to labeling including for sesame and precautionary labeling.
Maya too has played an important advocacy role. In addition to helping lobby for legislation she (and Jill) have served as media representatives and have been interviewed for a number of articles and programs for major media outlets.
Maya has also attended many conferences for teenagers with severe food allergies. As she grew older she began public speaking and serving as a role model as well. "My talent in the community has been speaking at a lot of conferences and groups about my life and how I've taken my food allergies and really taken control of them and have been able to my live life to the fullest while still keeping myself safe," she says.
While Maya has always played an active role in keeping herself safe, she started taking this job more seriously several years ago when she realized if she wanted to go away to college she would need to be able to figure everything out on her own. She began practicing calling restaurants in advance and speaking directly with chefs when ordering her meals with her mother supervising until she became comfortable enough to do it by herself.
It helps too that she has outgrown some of her allergies and successfully participated in a "triple threat" oral immunotherapy treatment trial beginning when she was 15. She was able to select three of her allergens (she chose peanuts, sesame and walnuts) plus was given a course of Xolair asthma shots to try to prevent a reaction during the up-dosing phase as she gradually increased her serving sizes. The third "threat" was a collection of Chinese herbs developed by Dr. Xiu-Min Li whose goal was to suppress the allergic response to any food. (Although the trial ended in December Maya does not know yet if she received the Chinese herbs or a placebo).
Now that she has finished the oral immunotherapy treatment she is completely desensitized to sesame and can eat foods containing it. With peanuts and walnuts she has reached a much higher safe dose. As long as she consumes a maintenance amount daily, she doesn't have to worry as much about cross contamination or taking an accidental bite of a food with one of those ingredients.
Obviously living with severe food allergies brings challenges but both Jill and Maya emphasize people can still have full lives — and they don't have to do it alone.
Their best advice for people living with severe food allergies?
"Seek out support," says Jill.
Maya agrees and takes it one step further. "My advice would be the same as my mom's. Definitely seek support and beyond that use that support to get yourself the confidence to be independent and be your own advocate."
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