Woman with rare syndrome regains health, helps others
Molly Macaire Forsythe runs marathons to benefit other people after surviving Sheehan syndrome. | Steve Johnston~for Sun-Times Media
Updated: July 1, 2012 12:59PM
After Molly Macaire Forsythe gave birth four years ago to her third child, she began to feel tired, sick and not herself.
Doctors told her not to worry. They told the Western Spring’s resident she was just a tired mother, a woman stressed out and in need of a good night’s sleep.
But deep down, Forsythe knew there was something wrong with her.
Unsatisfied with the diagnoses she received, Forsythe took to the Internet in search of an answer.
This research led her to believe she had something called Sheehan syndrome.
According to the Mayo Clinic, Sheehan syndrome affects women who experience severe blood loss during or after childbirth. The blood loss deprives the body of oxygen and can ultimately damage the pituitary gland. The result is the permanent underproduction of essential pituitary hormones.
“I was constantly sick with a cold that would turn into bronchitis, so exhausted that I could fall asleep anywhere at any time despite having a full night’s sleep. My skin was pale and dry. My blood pressure abnormally low and I was extremely dizzy, especially upon standing,” Forsythe said.
About a year and a half ago, Forsythe was in China — her husband worked there — when she had to get emergency surgery for an ovarian cyst. While there, she insisted that the doctor test her for Sheehan syndrome.
Sure enough, the results showed that Forsythe had Sheehan syndrome. Within weeks, Forsythe was getting the hormone treatment she needed and was soon seeing her health improve.
If she had been diagnosed sooner, she could have begun restoring her health sooner.
“When we see our doctors, we need to make a list of our symptoms. … We need to challenge our doctors,” Forsythe said.
According to the National Library of Medicine, the disease can be life-threatening if not treated. Treatment involves estrogen and progesterone hormone replacement therapy, which must be taken for the rest of a woman’s life. Thyroid and adrenal hormones also must be taken.
Now 39 years old, Forsythe has been feeling better for the past three months. She exercises regularly and is careful about her diet.
Forsythe has also taken up a cause.
Whenever she meets someone who has a rare disease, she runs a marathon in that person’s honor. While some people participate in runs or walks in order to raise funds, Forsythe does so simply to raise awareness. For instance, she will be running June 9 in the Allstate Life Insurance Chicago 13.1 Marathon. Her goal is to raise awareness of rare diseases like Landau–Kleffner syndrome, Rett syndrome, Batten disease and Sheehan syndrome.
Forsythe has also started an email campaign to encourage people to look for the symptoms of rare diseases.
“There’s so many different diseases. … There’s tons of rare diseases, just tons of them,” she said.
Armed with a list of email addresses, Forsythe sends out weekly letters highlighting the stories of people with some rare disease. She also uses her email list to encourage people to maintain their health.
Anyone interested in hearing from Forsythe, can send her an email at email@example.com.
She says it is important to spot the symptoms of rare diseases early, so as to improve the chances of recovery.