Women With HAE, You Need To Know This

If you have been anywhere near the hereditary angioedema (HAE) community, you may have seen or even asked a question similar to the one regarding the gender differences in the disease.

Q: My uncle has HAE, but he doesn’t have nearly as many attacks as my daughters do.  Is it because he’s a guy?

A: Although hereditary angioedema (HAE) occurs in both men and women, women may experience more HAE attacks than men. Why? According to an article by Dr. James Baker in the February 2012 issue of The Female Patient, the culprit may just be the estrogen-related changes experienced by women. Estrogen levels rise and fall in response to various life stages. Here are 6 reasons why a woman’s HAE may be affected during each stage:

1. Puberty: One study reported that HAE worsened at puberty in 62% of females.

Who does? Source: Giphy

2. Menstruation: For many women,  menstrual periods are accompanied by an increase in  HAE attack frequency; menses and ovulation triggered attacks in 35% and 14% of women, respectively

The menstruation period is difficult enough, adding HAE flare-ups can make it even more devastating to deal with. So note to husbands, keep momma happy. Source: ThePookaPicks

3. Contraception: 80% of women using combined estrogen-progesterone oral contraceptives reported exacerbated disease. Progesterone-only birth control pills or IUDs (intrauterine devices) were well-tolerated in over 80% of women with HAE and so should be considered as an option for HAE patients.

A message to the men of the world who refuse to take precaution on their own behalf. Source: Giphy

4. Pregnancy: Pregnancy’s affect on women with HAE varies:

Carrying a baby for 9 months with HAE is no easy task. Be sure to take extra precautions and regularly track progress with your doctor. Source: Tumblr
  • Nearly 70% of pregnancies affected HAE episodes, with 38-48% worsening disease and 30-33% improving disease
  • Women whose attacks increased during their periods had more attacks than women whose HAE attacks weren’t affected by menstruation
  • In women whose HAE worsened with pregnancy, the most frequent sites of  their swelling shifted from their extremities to their abdomen and extremities
  • More attacks happened during the 3rd trimester vs. the 1st trimester, but attacks seemed more troublesome in the 1st trimester because of their severity and localization.
  • Subsequent pregnancies typically follow a pattern of attacks similar to the first pregnancy
  • The good news is that in studies describing deliveries, complications such as miscarriages. early deliveries, or complications during delivery were not increased in women with HAE compared with the general population

5. Lactation: In a study of breastfeeding among women with HAE, attack frequency was about 2-3 times higher than before pregnancy

If your children come out like this…call us! Source: Reddit

6. Menopause: 55% of women with HAE reported no effect on their symptoms during menopause and 32% reported their symptoms got worse. Because estrogen can increase attacks, hormone replacement therapy is typically not recommended for women with HAE. Vaginal creams that include estrogen should also be avoided.

Everyone else sees a beautiful aging woman, but this is all we can think of. Source: Reddit

To read more about how HAE makes a direct impact on women, check out Baker’s full length article.



EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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