When Sarah Gorlick had to decide what to do for her mitzvah project, she knew immediately what it would be. Since Sarah’s birth, her mother, Lisa has been coping with Sheehan’s Syndrome, a rare disease of the pituitary gland that affects every aspect of one’s life.
Lisa Gorlick started hemorrhaging at Sarah’s birth, but it wasn’t until the birth of her second daughter, Isabella, that all her symptoms were finally diagnosed. “A lot of women die before it is diagnosed,” said Lisa, “because it is passed off as post partum depression.” That was the diagnosis she heard for years of going from one doctor to another. “One of the endocrinologists said there was nothing wrong with me and sent me to a psychologist,” said Lisa. Fortunately, the psychologist had done undergraduate work in endocrinology and was suspicious of Lisa’s symptoms. She sent Lisa for a series of specialized tests. That‘s when Lisa was finally given the name of her disease and found an endocrinologist who was familiar with the disease.
Sheehan’s Syndrome is caused by severe blood loss during or after childbirth. This blood loss can be particularly damaging to the pituitary gland and may destroy hormone-producing tissue. When necrosis or death of the pituitary gland occurs, the pituitary may lose some or all of its function.
The pituitary gland releases hormones that control almost all of our endocrine system. It is the master gland that sends signals to our other glands to produce hormones that regulate growth in childhood, and controls our metabolism, libido, fertility, emotions, sexual maturity, and muscle tone, and generally makes life pleasurable.
During pregnancy the pituitary becomes enlarged, but its blood supply becomes diminished. If a woman hemorrhages during childbirth, it causes a severe drop in blood pressure (hypotension) and may damage the pituitary. A simple way to understand this concept is the loss of blood (hemorrhaging) to the pituitary creates an infarct (stroke) in the pituitary. The infarct causes part or the entire pituitary to stop functioning. This damage to the pituitary gland can happen immediately after childbirth, or the gland can gradually decline in function.
In Lisa’s case, every hormone was depleted. While she takes medication to replace the hormones, it’s not like the “real thing,” and every day remains a challenge for her. Fatigue is constant, and she is limited to maybe one outing a day. If she is out too long, she becomes dizzy and is unable to continue.
“It is an invisible disease,” she said. “It’s so frustrating because people don’t see it.”
Exercise is not really an option, because the body does not function normally. After a long walk several years ago, she developed embolisms in her lungs and now has only one functioning lung. A couple of years later, she suffered from a perforated colon, common among sufferers of Sheehan’s Syndrome, and was fortunate to eventually have the reversal surgery eliminating the need for a colostomy bag.
In spite of all of this, Lisa considers herself fortunate. “My husband is able to work form the house,” she said, “because he is the one who has to get the girls ready for school.” She also is has insurance that has paid for most of her hospitalizations and pays for her medication, which adds up to $80,000 per year, though it isn’t easy dealing with insurance companies. “Imagine the poor women who are not only misdiagnosed” she said, “but when they are, don’t have the means to pay for the medical care they will need.” Many are not aware that there are state-run programs that provide some assistance.
Lisa spends most of her time responding to the many folks who visit the website she established to help inform people about the disease and connect with those who have Sheehan’s Syndrome, or the related Addison’s Disease. She feels fortunate also to live in a time where she has access to information, i.e. the Internet. Through the Internet, Lisa has been able to connect other Sheehan’s Syndrome women. This online group has given her knowledge, compassion, and a place to emotionally connect.
Sheehan’s Syndrome is classified as an adrenal disease, and, therefore, patients with the disease may turn to the National Adrenal Disease Foundation, (NADF) a 501(c) (3) non-profit organization that offers a range of services. “I have learned so much from this organization,” said Lisa. Through its website, Lisa has been able to find regional meetings, giving her the opportunity to share information with others who may be afflicted with adrenal diseases. From this online group she was able to find a knowledgeable endocrinologist who specializes in the pituitary. Many endocrinologists only specialize in diabetes and don’t have many pituitary patients. Most doctors and endocrinologists have never seen a Sheehan’s Syndrome patient. And while the majority of medical books state that a Sheehan’s Syndrome woman can live a, “normal life” with medication, “I’ve never heard of or met a woman with this disease that lives a normal life with medication,” said Lisa. The NADF also sends out quarterly publications to its members with up-to-date information. Like many non-profits, the NADF runs on a shoestring budget, and any type of financial support given to the NADF is much needed and extremely appreciated.
So when it came time to select a mitzvah project for her Bat Mitzvah, Sarah knew she wanted to do something that would support the organization that has been helping her mother. It was this, along with her love of sewing that motivated her to sell pillows and raise funds for the NADF. Sarah, herself, had been affected by the trauma of her birth, having been diagnosed with epilepsy – but has been seizure free for five years.
“She is such a giving soul,” said Lisa, “and worked very hard to complete this project.”
Sarah visited numerous wholesale fabric shops, sewed countless hours during the summer, and learned how to calculate a financial return on her sewing materials. Sarah’s pillows may be viewed and purchased at www.PillowsBySarah.com. The price, $19.95 includes shipping anywhere in the continental United States. All profits from Sarah’s pillows are donated to the NADF. To date she has raised over $1,000.00, but more than that she has helped raise awareness of this little known disease. So far, she has had 18,000 hits.
Those 18,000 hits represent part of the goal that Sarah and her mother Lisa want to achieve: To inform people about this little known disease and reach those who may be suffering from it. You can find additional information about the NADF, Sheehan’s Syndrome, health insurance, and living with a chronic illness at Lisa’s website: www.HypoGal.com.