Three-Penny Memories: A Poetic Memoir (EIF – Experiments in Fiction, 2022) is mainly about my caregiving to my mother, who suffered from Alzheimer’s. However, two other health conditions/ diseases are crucial parts of my memoir. Mom took care of me when I had measles encephalitis when I was 6 going on 7. Also, following doctor’s orders, she took diethylstilbestrol (DES) when I was in utero in order to prevent a miscarriage. Tragically, DES Babies (DES Daughters and DES Sons) suffer from a damaged reproductive system as well as cancer scares. In addition, their children are also damaged by this drug. That wound was the deepest for me to heal.
I assembled this fact sheet to help build awareness of these three culprits in my story: Alzheimer’s, measles encephalitis, and DES. More information can be accessed with the links.
“Around 6.5 million Americans age 65 and older are affected by Alzheimer’s.
73% are age 75.
Almost 2/3 are women.
Older Black Americans are twice as likely to have Alzheimer’s or other dementias as older Whites.
Older Hispanics are almost one and one-half times as likely to have Alzheimer’s as older Whites.
By 2050, of people age 65 and older, this number will likely increase to 12.7 million unless medical science can find the means to prevent, slow or cure this disease.” https://www.alz.org/ and https://www.alzfdn.org/
In Missouri, 120,000 Missourians were impacted by Alzheimer’s in 2020.
An increase of 8.3% is predicted by 2025. (ABC 17 – Fox 22 News, October 10, 2022)
Measles is “a highly contagious, serious disease caused by a virus. Before the introduction of measles vaccine in 1963 and widespread vaccination, major epidemics occurred approximately every 2-3 years and measles caused an estimated 3.6 million deaths each year. More than 140,000 people died from measles in 2018 – mostly children under the age of 5 years despite the availability of a safe and effective vaccine… During 2000-2018, measles vaccination prevented an estimable 23.2 million deaths (who.int).”
According to the Encephalitis Society, nearly 1 child out of every 1,000 who contract measles will develop encephalitis (swelling of the brain), which can lead to death (10-15% of those cases) and in 25% of cases, neurological damage. Also, 1 in 25,000 of children (1 in 5,500 children if they are under 1) with measles will develop subacute sclerosing panencephalitis (SSPE) which has a fatal outcome. https://www.encephalitis.infomeasles-incection-and/encephalitis
When I was 6 going on 7, measles encephalitis paralyzed me, robbed me of the ability to speak, and put me into a month-long coma. When I awoke form the coma, I was unable to walk and was told I would never walk again. However, I proved the doctors wrong. Here’s my story on the Encephalitis Society website. https://www.encephalitis.info/barbaras-story
“Diethylstilbestrol (DES) is a synthetic form of the female hormone estrogen. It was prescribed to pregnant women between 1940 and 1971 to prevent miscarriage, premature labor, and related complications of pregnancy (1). The use of DES declined after studies in the 1950s showed that it was not effective in preventing these problems, although it continued to be used to stop lactation, for emergency contraception, and to treat menopausal symptoms in women (2).
In 1971, researchers linked prenatal (while in the womb, or in utero) DES exposure to a type of cancer of the cervix and vagina called clear cell adenocarcinoma in a small group of women (3). Soon after, the Food and Drug Administration (FDA) notified health care providers throughout the country that DES should not be prescribed to pregnant women (4). The drug continued to be prescribed to pregnant women in Europe until 1978 (5).
DES is now known to be an endocrine-disrupting chemical, one of a number of substances that interfere with the endocrine system to potentially cause cancer, birth defects, and other developmental abnormalities.”
DES gave me a t-shaped uterus, which was unable to sustain and nurture an embryo, causing a painful miscarriage; and cancer scares, which led to several breast and uterine biopsies, a partial thyroidectomy, and a hysterectomy. I’m only one of an estimated five to 10 million people exposed to DES when they were in utero between 1938 and 1971. Of the exposed, I am among 33%, who have reproductive problems. https://www.integrisok.com
Barbara Harris Leonhard
Thank you for raising awareness of all of these conditions and complications Barbara. Your book does much to draw attention to all of these issues!
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Thank you, Ingrid! I’m making copies of this information sheet to have available at my bookshop launch tonight.
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