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Posted by Linda Hageman, RN (@hagm04) · Mon, Jul 14 at 4:11pm CDT

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.

Questions about the contest or the voting process? Click here.

SM Scholarship 2014

LizC, Kristen Foster, Vanessa Armenta-Devore and 22 others like this
 

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Patty (@momuma) · Tue, Jul 22 at 12:11pm CDT · #

Linda is a very successful go getter, and is dedicated to educating and helping many people from around the world who have or care for those with MEN. I thank Linda for all she does.

RobEURORDIS and zmz like this

AlisaZaita (@alisazaita) · Tue, Jul 22 at 4:18pm CDT · #

Great Essay! I am voting for her and hope she wins this contest!

zmz likes this

Linda Hageman, RN (@hagm04) · Wed, Jul 23 at 12:55pm CDT · #

Thank you for being so kind. Please feel free to share this to gather more
support. The Best Of Health, Linda Hageman, RN

ESSLocumPA likes this

Kris Rives (@krives) · Thu, Jul 31 at 8:42am CDT · #

I enjoy being a part of the AMENsupport group. I love the support that I get from my team of doctors at MD Anderson Houston, but it's so helpful to hear and learn about others with the same mutation. A special thanks goes to Linda Hageman for starting this group so that we could all have a place to "come together" :)

Linda Hageman, RN (@hagm04) · Thu, Jul 31 at 3:36pm CDT · #

Thank-You so much Kim. You have made my day! Sometimes utilizing Social
Media I sometimes ask myself if there is anyone out there utilizing our
information. So Thanks and it would be a HUGE Gift for me to have more
people vote and you can vote more than once and please share. This Seminar
will enable me to get more education about Social Media to reach more
individuals with Multiple Endocrine Neoplasia (MEN) The Best Of Health
Linda

RobEURORDIS (@robeurordis) · Fri, Aug 1 at 3:28am CDT · #

Linda is a volunteer moderator on the international MEN community on RareConnect: https://www.rareconnect.org/en/community/multiple-endocrine-neoplasia where she helps provide information to people living with MEN around the world. This training is a great idea to further her skills.

Guthrie (@guthrie) · Fri, Aug 1 at 4:45pm CDT · #

Thank you Linda!

Jennifergarcia (@jennifergarcia7000) · Fri, Aug 1 at 9:44pm CDT · #

Linda is an angel! Thanks for being there!!!

James Sliney Jr. (@jamesslineyjr) · Fri, Aug 1 at 11:36pm CDT · #

Since I have known Linda Hageman she has been a model of how to get things done and how to navigate a complex medical space. If she were to gain the social media scholarship I am positive she would bend those new talents towards her lifelong mission of helping the Multiple Endocrine Neoplasia population, a rare disease that needs well equipped advocates like Linda.
- Jim Sliney Jr, RMA

LizC (@joyful) · Sat, Aug 2 at 2:09pm CDT · #

Wonderful essay Linda! You have worked so hard for this and I know it's all very appreciated.

Linda Hageman, RN (@hagm04) · Sun, Aug 3 at 8:40am CDT · #

Thank You Liz. Linda Hageman, RN

LizC and The James like this

Donna Melendez (@donna825) · Sun, Aug 3 at 12:15am CDT · #

You are such and inspiration and example of what positive thinking and LIVING is all about, great essay

Linda Hageman, RN (@hagm04) · Sun, Aug 3 at 8:38am CDT · #

Thank-You so much Donna. This nonprofit is truly about Multiple Endocrine
Neoplasia and educating MEN Families, Individuals, and Physicians at www.
AMENSupport.org it is all of you and MEN Individuals that are an
inspiration to me to further advocate for this Genetic Mutation. The Best
Of Health, Linda Hageman, RN

PeacockMantis (@kendallrhema) · Mon, Aug 4 at 12:22pm CDT · #

I don't know what I would do without Linda Hageman. Without her people like me would have no where to turn for help.

Linda Hageman, RN (@hagm04) · Tue, Aug 5 at 8:41am CDT · #

Thank-You Emily. Please encourage your family to vote also. Linda

barbara j (@barbarajgreen) · Mon, Aug 4 at 4:18pm CDT · #

Linda, is truly amazing! Her spirit, her energy, and perseverance in dealing with her very serious medical issues, and her dedication to helping others with MEN education is inspirational! Bless you for the work you do and for all the lives you have touched! Hoping you are awarded the SM Scholarship....YOU ARE MOST DESERVING!!

Vanessa Armenta-Devore and salvadorg like this

RobEURORDIS (@robeurordis) · Wed, Aug 6 at 9:48am CDT · #

Keep up the good work Linda

salvadorg and zmz like this

Mark Lewis (@marklewis) · Wed, Aug 6 at 12:24pm CDT · #

Linda and her husband have given countless hours and dollars out of selfless devotion to raise awareness for this "rare" disease (which might not be as rare as we think). The reason education is particularly important for doctors and patients alike is the tip-of-the-iceberg effect. At one seminar she gave, Linda identified a man who was part of an MEN1 kindred that affected over 20 of his family members. Now they can all be properly screened for the tumors that affect MEN1 mutants. Physicians won't make a diagnosis if they aren't thinking of the diagnosis, so Linda has also aligned herself with endocrinologists and other specialists at centers of excellence across the country to ensure that MEN syndromes remain in the differential diagnosis. She is truly changing the way this disease is recognized and managed.

Vanessa Armenta-Devore, salvadorg, Glen Gray like this

Linda Hageman, RN (@hagm04) · Wed, Aug 6 at 12:36pm CDT · #

Thank-You so much Mark. Ll

salvadorg likes this

golfguy (@golfguy) · Wed, Aug 6 at 6:53pm CDT · #

When I first started having issues with my pancreas and parathyroid Linda was the one that made sure I got to the right doctor who could diagnose what was really going on with me. I'll never forget what she did for me.

Sharon (@sharonski60) · Wed, Aug 6 at 9:52pm CDT · #

Linda is very educated in MEN. She helped my brother find the right doctor for his pancreas cancer and he is doing fine. I trust what she tells me, as I know she has experienced MEN personally and searched to find information that she could share. She and her husband have done a great job with their foundation.

salvadorg and Glen Gray like this

WhitehorseTN (@whitehorsetn) · Fri, Aug 8 at 8:33am CDT · #

Excellent post Linda! You bring a uniquely strong perspective of personal experience, work experience, & ongoing education to MEN. You turn information into positive action.

salvadorg likes this

salvadorg (@salvadorg) · Fri, Aug 8 at 8:53am CDT · #

Great Essay! Best of luck and thank you for ALL you do!

santiagocruz (@santiagogarcia) · Fri, Aug 8 at 8:56am CDT · #

Linda is such a blessing! Thank you for getting the word out about MEN! Best of luck with the scholarship!!!

Paula Hurt (@hurtpr) · Fri, Aug 8 at 11:16am CDT · #

I am casting my vote for Linda Hageman. She is a caring and supportive person who is always ready to share her experience and knowledge with others. Linda's story crystalizes the struggles and triumphs so many face on a daily basis. She is a shining example of strength in the face of adversity.

Bucky9 (@voter2014) · Fri, Aug 8 at 2:47pm CDT · #

Linda provides excellent support and education for people touched by MEN 1. My vote goes to her.