Posted on August 1st, 2012 by Admin
Editor's Note: Lisa G. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
As I scrolled through my Facebook account, I noted that The Mayo Clinic has a Social Media Summit Conference scholarship contest. I also noted, that the deadline was August 3rd. I quickly, doubled checked my calendar, yep, it was already, August 1st. It was already after 7:00PM and the sun had already began its departure.
So I decided, to handle the deadline challenge just like the rest of my medical ailments, move forward. The inspirational words, social media was the phrase that enabled me to temporary halt my life and begin to click away on this essay. Please, like, tweet and comment this HypoGal to the Mayo Clinic Social Media Summit.
My essay title is direct and on point. My name is Lisa and on the World Wide Web, I write by the pen name, HypoGal. I created the HypoGal web site in 2010 to expand awareness of the rare disease, Sheehan's Syndrome. Sheehan's Syndrome is a rare disease of the pituitary gland that is frequently misdiagnosed. The pituitary gland is a burnt red, soft, oval pea sized gland that is located at the base of our brain.
The pituitary gland is often referred to as the master gland. It is refered to as the master gland because the pituitary releases hormones that control almost all of our endocrine system. The master gland (pituitary gland) sends signals to our other glands to produce hormones that regulate growth in childhood, control our metabolism, libido, fertility, emotions, sexual maturity, muscle tone and essentially make life worth celebrating.
Sheehan's Syndrome is caused by severe blood loss during or after childbirth. The blood loss during and post childbirth can be particularly damaging to the pituitary gland. The loss of blood to the pituitary gland may destroy hormone-producing tissue. When necrosis of the pituitary gland occurs the pituitary may lose some or all of its function.
I developed Sheehan's Syndrome in 2002 during the arrival of my beautiful second daughter. Immediately after her birth my body went into adrenal crisis. I began to vomit, my body temperature began to lower, my blood pressure declined and I literally felt like I was hit by a bus. I knew something was terribly wrong with my body but it would take a terrifying nine months before the diagnoses of Sheehan's Syndrome. This disease is rare and I was misdiagnosed numerous times. And, even when the disease is diagnosed correctly, many patients are not able to receive the proper lab testing and treatment plans necessary to help obtain a balanced life style.
I knew I was frustrated with the lack of medical information with this rare disease. I also felt extremely isolated. I was fortune to have a very caring Endocrinologist inform me about an online Sheehan's Syndrome Group. It was through the help of this online support group and numerous other online tools that I was able to navigate my daily care with Sheehan's Syndrome.
Sheehan's Syndrome is a difficult invisible, chronic disease to manage. My physical and emotional health would not have progressed in such a positive manner if it were not for all the caring and knowledge individuals that selflessly gave me their time.
However, I realize my social media skills are limited. The Social Media Summit Conference would give me that education, guidance and direction to empower my voice. And, most importantly I would be able to play it forward to a much larger audience.
So, please if you have Facebook then, "Like" this essay. And, if you have a Twitter Account, then please , "Tweet" it. More than ever, your comments are absolutely needed. Please help enable this HypoGal's voice to echo.
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