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What is MEN? Multiple endocrine neoplasia (MEN) syndromes are inherited disorders that affect the endocrine system. There are several types of MEN syndrome and each type may cause different conditions or cancers. Learn More
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Providing Support and Education The Hageman Foundation provides support and education for those who have Multiple Endocrine Neoplasia (MEN) Types 1, 2A, 2B, their families, and caregivers. Learn More
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Professional Network Our vision is to provide up-to-date and relevant information about key issues associated with managing MEN for individuals, families and health professionals. Learn More
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MEN Seminars

MEN Seminars Part of our educational outreach is hosting free MEN Seminars. Our next seminar is Oct. 3.

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Rare Disease Connection

Rare Disease Connection RareConnect is a new online community for people with a rare disease like Multiple Endocrine Neoplasia.

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Ask Dr. Lewis

Ask the Doctor Dr. Mark Lewis has joined our board and is available to answer your questions about MEN.

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support-for-families-and-physiciansWelcome! Do you or someone you know have Multiple Endocrine Neoplasia (MEN)? Then you are in the right place. This site is designed to provide support and education to individuals and families living with MEN Type 1, 2A, 2B and subsets of MEN.

Our goal is educate people about MEN through public awareness, advocacy and raising money for research and professional advances in treatment.

Are you a physician? Do you have patients living with MEN? Our site provides a resource for your patients and their families to learn more about living with MEN. We also provide a network for physicians and articles about the latest in MEN.

Our vision is to provide the first American MEN Support Center in the United States to keep MEN families and health professionals informed of the key issues associated with managing the disease.

Please take your time and read through the articles on this site. We encourage feedback and comments, so please feel free to let us know what you think. If you have any questions or would like to get involved with our efforts, please contact us.

Answers from Dr. Mark Lewis

Q: I was diagnosed with MEN Type 1. The gallium 68 scan showed my pancreas lit up with some consolidation and the tail. My medical doctor said he’d seen this with MEN Type 1, but said that there was no solid tumor showing. Should I pursue diagnosis of the pancreas. For instance an endoscopic US?  […] (more ...)
Q: If I have gastrinomas, does that automatically mean I have ZES? A: Some doctors think that ZES is a clinical diagnosis based on the presence of ulcers and acid over-secretion that’s refractory to medications like the PPIs, e.g. Nexium. However, it’s technically correct to say that an MEN1 patient with gastrinomas has ZES. (more ...)
Q: My sister was diagnosed with MEN 1 which was confirmed by genetic testing so I was tested. My result was positive for a heterozygous “novel P373A missense mutation,” which Mayo interpreted as disease causing since P373L and P373S mutations have associated MEN1. All I can find is a colon CA association. I am 58 […] (more ...)
Q: Why does my physician order 24-hour urine testing for 5HIAA?  A: With regard to 5HIAA, it stands for 5-hydroxyindoleacetic acid, and represents a metabolite of serotonin (also known as hydroxytryptamine, or 5HT), not serotonin itself. Normally 1 to 3 percent of dietary tryptophan is metabolized to serotonin. However, as much as 50 percent of […] (more ...)
Q: Are renal cysts part of MEN Type 1? A: To the best of my knowledge renal cysts are not associated with MEN1. There is a related genetic syndrome called hyperparathyroidism – jaw tumor syndrome – in which renal cysts are more common (especially in patients of Dutch descent), but I do not believe there […] (more ...)
Q: What is a carcinoid tumor?  A: The term carcinoid actually originates from the German word Karzinoide. In 1907, a pathologist at the University of Munich named Siegfried Orbendorfer recognized an unusual type of tumor growing in the small intestine of certain patients. This tumor looked different under the microscope than a typical cancer (carcinoma), […] (more ...)
Q: If there is a tumor, and it is not taken out soon enough, is there a possibility that it can become cancerous?  A: Almost all parathyroid growths in MEN are adenomas (non-invasive) rather than carcinomas (invasive). There is a tiny fraction that are carcinomas, but the treatment is essentially the same: surgical removal.    […] (more ...)
Q: What does a rising and falling PTH indicate?  A: Variable activity of the parathyroid glands. Most parathyroid adenomas continue to release PTH regardless of the calcium level. In a normal patient, the calcium level feeds back to the parathyroid glands, such that a high calcium ought to suppress PTH release.    Q:  Can a […] (more ...)
Q: Will I be more prone to get colds, flu, viruses and bacterial infections after my spleen is removed?  A: Basically once you’ve had your spleen removed you are more susceptible to a small number of infectious organisms: pneumococcus, meningococcus, haemophilus. There are vaccinations against all of them, which should be given at the time […] (more ...)
Q: Why is it likely that a second parathyroid adenoma would develop after the first was removed? Is there a mechanism that elevates calcium and PTH that creates a second adenoma? Is there any way to prevent it from happening? My endocrinologist is warning me to “be on the lookout,” but I don’t understand why.  […] (more ...)

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Disclaimer

Materials on this website are not a substitute for medical care, consultations, or advice from certified medical professionals. All content is for personal and informational purposes only. The content of this site is general and may not apply to all diagnoses of Multiple Endocrine Neoplasia. We encourage all persons with Multiple Endocrine Neoplasia and related diseases to seek professional advice for specific questions and concerns.
We have made every effort to insure that content is accurate, correct and current, and are not liable for any unintentional errors. Links to other websites have been carefully chosen, but do not imply endorsement and we are not responsible or liable for their information and contents.
Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.