Population Health

In Their Own Words

An LDI Fellow Traces Her Journey From Ailing Mom to NIH-funded Researcher

Lynne Moronski of Penn Nursing Began in Health Care As a Patient and Now Seeks to Help Those With Disabilities

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The following excerpt is from an op-ed that first appeared in KevinMD.com on November 24h, 2024.

I went to the emergency room 16 times for allergies and asthma as a college freshman. Each time I was given a prescription for an EpiPen, an auto-injector pen that administers a dose of epinephrine, used for the emergency care of an acute allergic reaction.

I was told to figure out what I was allergic to. I tried very hard but couldn’t. All my life, I have had hives, eczema, asthma, atopic dermatitis, sinusitis, and food allergies. Somehow the college environment made things worse. The college was frightened, too, and asked me to live in the infirmary for a semester. What should have been a joyous beginning of independent college life was hampered by continuous allergic reactions. That semester was a low point. Little did I know that the solution would be in my genes, that it would change medical practice, and it would launch me into a new career.

My family and children also had severe allergies. As a child, my grandparents once threw a big party, and I stood in the corner crying because I thought hives ruined the look of my sundress. My aunt noticed my distress and said, “Look at my hives! See? We all have hives,” and that normalized the situation for me then and for many years to come.

My children, too, had hives, eczema, asthma, atopic dermatitis, sinusitis, food allergies, and anaphylaxis, but now we also have eosinophilic gastrointestinal diseases, which nearly killed my younger daughter, who was hospitalized for 30 days at Hackensack University Medical Center in 2006 when she was almost 2 years old. No one could figure out what was wrong, but she had uncontrollable diarrhea and vomiting. She stopped walking, her gums began to bleed, and she was down to 17 pounds. Malnutrition set in. They came in and put a heart monitor on her, telling me that “things didn’t look good.” One day she lay in bed and said, “Help me, Mommy!” I lost it. This was my moment of greatest despair.

In 2008, I sought out a new allergist, Dr. Lisa Ellman-Grunther, in New York. It took most of the morning for her to do an intake on me and my two children because our cases were complex. She didn’t think we had ten diseases: She thought we had one disease with ten symptoms. She felt I had a genetic flaw, and blood tests revealed I had an elevated serum tryptase, blood markers that usually indicate a severe allergic reaction, but I was sitting calmly in her office. How could this be?

She became a staunch advocate and referred me to the National Institutes of Health (NIH), which investigates challenging cases. They invited me to Bethesda, MD, and in the end, they called me to say they couldn’t find anything.

I sat on my kitchen floor, cried, and called a friend. She asked what difference a diagnosis would make. I decided then that I would keep investigating until I found an answer. I decided to be persistent about finding a better treatment.

Read the entire op-ed here.

Author

Lynne Moronski

Lynne Moronski, PhD, RN

Postdoctoral Fellow, Center for Health Outcomes and Policy Research, Penn Nursing

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