Posted by Linda Hageman, RN (@hagm04) · Mon, Jul 14 at 4:11pm CST
Linda Hageman, RN - Patient/Caregiver Scholarship 2014
I am the Founder and Executive Director of American Multiple Endocrine Neoplasia (MEN) Support, I am Linda Hageman, RN I bring over 10 yrs. experience of implementing non profits and have learned many lessons from start up non profits management. However my passion for MEN the past 9 years had been concentrated as a Rare Disease Advocate, an Educator, and speaker for the many individuals
that have MEN. We have had many MEN . We have grown in the past year by 2, 00 MEN individuals around the World.
MY MAYO CLINIC
By: Linda Hageman, RN
Which comes first – the chicken or the egg? While Mayo Clinic is known worldwide for its excellent care and world class physicians, it is the Clinic’s diagnostic expertise that has proven life-saving and life-changing for me.
My Mayo Clinic journey started after I had undergone open heart surgery, which I thought was going to be surgery to remove a parathyroid chest tumor. An endocrinologist and a thoracic surgeon made the diagnosis in my hometown and set out to remove the tumor through a laparoscopic procedure.
However, I awoke to find the physicians were unable to remove the tumor. Not only that, they had done an open heart procedure trying to find the tumor. After a six-week recovery period from the surgery, I learned that it had not been successful, that my calcium levels were still dangerously high, and it was suggested that I go to Mayo Clinic.
In the U.S., a disease is considered rare if it affects fewer than 200,000 people. Some rare diseases, such as Lou Gehrig’s disease (ALS), are well-known to the public. Many others are not. You can imagine the loneliness of having a disease that most people have never heard of, that has no treatment and is not being studied by medical researchers.
Thankfully, Mayo Clinic cares about rare diseases that get very little attention otherwise. Through my experiences with Mayo, I found I have a rare disease – a genetic mutation called Multiple Endocrine Neoplasia (MEN), which causes tumors to grow on endocrine glands. Because of this rare disease, I have had 23 surgical procedures over the past 25 years. I live without a pancreas, thyroid, parathyroids and a spleen. I also live without parts of my small and large intestines and part of my stomach.
Mayo Clinic’s staff – from housekeeping to the nursing staff and especially the top physicians in the world – do not look at you as a patient, but as person and family. They treat everyone with respect and each individualized person works with a team of physicians. No questions are too small; all procedures are thoroughly explained; and they even go so far as to make phone calls when needed. The staff at Mayo Clinic are so special because of their willingness to listen to you and respect your insight into what is happening in your body.
Mayo Clinic doesn’t stop at excellent patient care and diagnostics. With their encouragement and support, my husband and I founded Hageman Foundation, a nonprofit organization that provides resources for individuals, families and physicians dealing with Multiple Endocrine Neoplasia. Through our website American Multiple Endocrine Neoplasia Support (www.AMENsupport.org) we provide support, education and seminars at medical centers around the United States. In just seven years, I have been able to extend my nursing career in a way I never imagined possible. We touch the lives of people living with MEN around the world through our social media educational efforts and training we received at Mayo Clinic. We are proud to be members of the National Organization of Rare Diseases and to partner with Mayo Clinic to help spread awareness of Multiple Endocrine Neoplasia.
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