Stand Up, Speak Up

By Avery Keatley

Brenda hails from Long Island and sounds like it. Her words are not tangled in an accent so much as they are lightly peppered by diphthongs and an East Coast vocabulary. She speaks almost an equal amount with small, controlled hand gestures. But Brenda has struggled for many years to communicate, or rather, other people have struggled to understand her.

Brenda has had asthma for years, and her asthma always got worse around the time she was menstruating. She went to the hospital 12 times a year and spent six months of her second pregnancy in the hospital for her asthma. Brenda claims she and her obstetrician always knew she had hormonal-related asthma, but at the time, almost no one had studied it. Perimenstrual Asthma (PMA), a condition that can worsen asthma around menstruation. PMA has been documented in 30-40% of asthmatic women, according to one 2003 study titled “Perimenstrual asthma: a syndrome without known cause of cure.” A related article is titled, “Perimenstrual asthma: myth or reality?” With titles as inconclusive as these circulating in the medical world, Brenda had to learn to stand up for herself.cramps

When women are perceived as displaying too much emotion and being too vocal about it, too often they are derisively told they’re being hormonal—as though their hormones were under their conscious control. Once, when Brenda was staying overnight in the hospital, she asked for a breathing treatment, to which a nurse (whom she fondly refers to as Nurse Ratchet) responded that she would give her a Xanax to calm her down. Brenda agreed to take the anti-anxiety medicine, but still wanted a breathing treatment. After receiving one, she was still struggling to breathe and asked for another. Her body was telling her that she needed help, fast. Unfortunately, the providers weren’t so keen on listening. They called her husband, Brian, to say that she was being hysterical, and that he need to come calm her down.

Brenda spent a week in the intensive care unit.

In April of 2013, researchers, including Dr. Wenzel, conducted a study of PMA and its effects. This was the largest study to date of PMA. They found that PMA “represents a unique, highly symptomatic, and exacerbation-prone asthma phenotype.” In other words, PMA is a specific type of asthma that has its own unique symptoms. Though Brenda had realized her symptoms correlated with her hormones, there was now evidence that hormonal asthma existed in its own right.

On a recent support group call for severe asthmatics, Brenda shared her story with the group. She said she’s learned how to be her own advocate now, and that she has to stand up for herself. Self-advocacy, Brenda said, does help. She said it makes her condition real—to other people, and herself.



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