Finding Support and Friendship: Amelia and Hana
Amelia and Hana, now both eleven years old, first met in September 2014, when they were both enrolled in The Peanut Oral Immunotherapy Study: Safety, Efficacy and Discovery (POISED) and took their first peanut dose together. Since that day, they have remained friends and have stayed in touch.
Amelia’s mother, Elizabeth, realized that Amelia was allergic to peanuts when she developed hives in daycare after eating peanuts. The seriousness of the disease hit home when Amelia was three years old and went into anaphylaxis after eating ice cream that contained peanuts. When Amelia was tested, it was found that she was only allergic to peanuts, but not to other foods. Similarly, Hana was diagnosed with peanut allergy at an early age. However, in addition to peanuts, Hana was found to be allergic to most other nuts, such as cashews, almonds, walnuts, pistachios, macadamia nuts, and pecans (about 30% of children with food allergies are allergic to more than one food). “Living with food allergies is very stressful” said Hana’s mom, Alicia, “During her childhood, Hana had a number of anaphylactic reactions on eating nuts and it created a lot of anxiety for Hana and our family.”
Living with a diagnosis of food allergy was not easy for either of the families. Acceptances to social occasions involved either prepackaging of foods to the event or a serious discussion with the hosts about the foods that were being served there. Eating out at restaurants was difficult. Each school year brought new anxieties as teachers had to be made aware of and educated about their daughters’ food allergies and the use of an epinephrine auto-injector.
Alicia read the 2013 New York Times article that featured Dr. Kari Nadeau and her work on food allergies at Stanford while Elizabeth heard about the trials through a friend. Both were excited and hopeful about a possible treatment for their daughters’ food allergies. In 2014, Amelia and Hana were screened and they soon enrolled in the study. Hana and Amelia first met at the clinic as they were both scheduled to take their first dose of peanuts at the same day and time. “Going through the trial was not easy for Hana”, shared Alicia. “She had a few anaphylactic reactions during the treatment. Both my husband and I were very concerned how Hana would react to going to the hospital every 2 weeks. We told her that she could drop out at any time if it caused her too much anxiety. After one particular anaphylactic episode, Hana said that she was ready to quit. However, the next morning, she rallied and said she was ready to continue on with the study. We are very proud of her for pulling through and persisting with the study.”
Both mothers were very happy that their daughters had a friend to help them get through the study. “Eating peanuts knowing that you might have a reaction is stressful and having a friend to share those fears and unique experiences was invaluable for both Hana and Amelia. It was helpful for them to have each other and not be alone in the process. During blood draws, Amelia soon started holding Hana’s hand for support and strength,” shared Elizabeth. During the clinic visits, Elizabeth and Alicia also found strength and support from each other as they waited anxiously for their daughters to complete their scheduled visits.
Going through the POISED trial was not easy on the families. Besides the time commitment, there was a lot of anxiety associated with each peanut dose ingested. However, both families feel very grateful to have had the option to be a part of and complete the study. Hana and Amelia are both happy to no longer have to go into the clinic regularly. “Going through the trial was difficult but it was so much easier having a friend going through it with you,” said Hana. They motivated each other to stick with their dose. “When I was taking my dose at night, I knew Hana was taking her dose around the same time and this kept me motivated” Elizabeth confided.
Elizabeth and Alicia thank Dr. Nadeau and the staff at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University for their work, dedication, and support in desensitizing their daughters to peanut allergy and helping them recognize and manage any food-allergic reactions with confidence. “It has made a big difference to our lives. For the first time, we have allowed ourselves to enjoy Halloween. We were relaxed knowing that even if Amelia ate some peanut accidently, it would likely not be a severe reaction as she is now on a maintenance dose of 2 peanuts a day with no reaction. We also carry an epinephrine auto-injector and feel safe in the knowledge that we are able to cope in case of a severe reaction” said Elizabeth. “The study has also empowered the girls. They feel so much more in charge. They both know when and how to use an epinephrine auto-injector,” emphasized Alicia. Although Amelia still does not enjoy eating peanuts, Elizabeth now has peanut butter in the house for other members of the family to enjoy and feels comfortable with the idea of Amelia going to an overnight camp next summer.
Interview by Vanitha Sampath
Vanitha Sampath received her PhD in Nutrition from the University of California at Davis. At the Sean N. Parker Center for Allergy and Asthma Research, as a medical writer and content manager, she enjoys being in the midst of groundbreaking research in asthma and allergy and is committed to communicating the scientific advances of the Center and spreading awareness of its mission and vision.