I am so excited to be able to present a blog where people with MEN1 can get information and resources. Believe me, I know the life of an MEN1 person. I have undergone 22 surgeries in the past 20 years. I was so amazed when I actually decided to start hagemanfoundation.org that I had been through so many procedures. I realized that I was trying to lead a normal life and would just go from procedure to procedure and concentrate on trying to get better from MEN1.
Now I know that you do not get better from MEN1, because it is a gene defect that cannot be fixed. However, being a nurse and in my studies on MEN1, I have found out that many good people are working diligently on MEN1 to provide newer testing and a better quality of life. This site is also for caregivers of MEN1 people, as my husband John has helped me with all the procedures and recovery. I hope you’ll share your comments and stories about your MEN.
I, too, have been in and out of the hospital since I was 17 from conditions related to MEN1. From kidney stones, to 3 parathyroid surgeries, to most recently a distal pancreactomy and spleenectomy. Now that my pancreas is involved with multiple adenomas the diagnosis of MEN1 now has been made. I wonder about local support groups in the Atlanta area. I worry about having passed this on to my children. I hate the thought they will have to suffer as I have.
Hi Terri,
I am so sorry you are having to go through all of this. You are right to be concerned about your children. Have you had them tested? Have any other family members been tested?
I was the first in my family to be diagnosed as well. Things just had to progress so far in me that so I could be diagnosed. Now most of my family (cousins and such) have also been tested. There are still a few who refuse to be tested. I worried for a long time and have finally come to realize that I can do nothing for them.
I know a woman who has our difficulties and lives in southern Georgia. If you are interested please let me know and I will try to get you two in contact.
I have just learned that there is a 1 day free MEN conference being held at MD Anderson on June 26, 2010. MD Anderson is located in Houston, TX.
I have already purchased my plane tickets and registered on line for the conference. Though I have not had a return e-mail.
This conference would be a great place for you to meet other people with the gene.
If you want to exchange e-mail addresses please let me know.
VIckie
FREE MEN CONFERENCE AT MD ANDERSON.
Hi everyone,
Staff at MD Anderson in Houston, TX, is holding a one day free conference for all MEN patients and their family/care givers. It is being held on Saturday, June 26, 2010. Reservations can be made on line by e-mail. This information is posted on their website. Wouldn’t it be great to have support from other MEN patients? Hope to see you there.
VIckie
I too will be attending the MEN Seminarat MD Anderson. to speak and have an informational table. Hageman Foundation for Multiple Endocrine Neoplasia is a non profit my husband and I started 3 years ago. I had to have a complete Whipple Procedure (removal of pancreas, stomach, large intestines, gall bladder etc) I was no longer able to work as a nurse so we went to The Mayo Clinic in Rochester, MN and asked what they thought about us starting the first non-profit dedicated to MEN and all it has to offer. Since that time we have been to several
Endocrine meetings and only post factual, accurate, medical information. It was one of my goals to only put out the latest and approved medical information available. Mayo Clinic is backing http://www.multipleendocrineneoplasia.org along with several other major medical centers. At this time we are in the process of planning a 4 day seminar at Mayo Clinic in September 2011.
Please feel free to call me 865-981-8815 or e mail me.
Linda Hageman, RN linda@hagemanfoundation.org
Unfortunately, I will not be able to get to Texas in June, but hopefully will make it to a seminar in 2011. My family (3 out of 4 children) in my immediate family have MEN-1 passed from my father (there were 4 out of 7) with MEN-1 in his immediate family that have MEN. QUESTION though, has anyone ever came across a physician that feels blood clots has anything to do with MEN?? — Two of my aunts with MEN-1 have horrible blood clots and I am going to be evaluated for a circulation problem that may possibly be causing my visual changes in my right eye and headaches (since September)!! — recently diagnosed with a 3-mm microadenoma of the pituitary which of course has been ruled out as a source of these symptoms. Any info anyone can provide, would be appreciated.
Hi Susan,
Thank-You for posting on http://www.multipleendocrineneoplasia.org. In the literature I have read I do not recall a connection between blood clots and MEN, however I will do some researching on this and will get back to you if I do. If you have a known pituitary tumor and are having blurring of your vision and headaches, I would make a appointment with your physician to have the pituitary adenoma reevaluated.
I hope you can make it to the seminar Sept.2011. It will be in Rochester, MN.
I go to Mayo Clinic for my MEN care and I have several physicians who want to participate in this seminar. I am so blessed to have such wonderful physicians who have helped and have been so encouraging with this non-profit.
Good evening.
My wife has MEN1. She went through the octreotide scan. It was negative. She also went through the endoscope with sonogram. Also negative. We’re trying to find an endocrinologist who knows of MEN1 and has a precedence for treating it. We live in the NY-Tri-State Area. We’ll obviously travel wherever we need to in order to partner with the right person. Recommendations, please and thanks.
G*d Bless. Ross Greenberg
Dr. Ross at Mass General Hospital knows a great deal about this condition.
Thank-You Caroline. Would it be possible to elaborate more on Dr. Ross and Mass General Hospital.
We appreciate your information. Welcome to our web site. We are trying to contact more people who have the need for the information we provide. We also welcome any suggestions you may have to improve and refresh our site. Many things are happening in Endocrinology and we try to keep people up to date, so we do appreciate your input. If possible could you take our information to Dr. Ross so he can give it to more people with MEN.
Linda Hageman, RN
Hi Caroline,
I am in fact looking for physicians who know this condition well. Is there any way If I send you brochures that you could take them to his office? We are working in collaboration with Mayo Clinic, because I do not want misinformation to be posted on the web regarding anything on this site. I am trying to get the information out on MEN that is factual ,actual and medically approved on Hageman Foundation. Look through http://www.multipleendocrineneoplasia.org and let me know what you think of the site. also let me know if you would if you could use some brochures or bookmarks (a save the date bookmark) We are working again in collaboration with Mayo Clinic, in Rochester, MN. this seminar is for non-medical people and for medical personnel, It is scheduled for September 15-18, 2011.
Thank-You Caroline for using our website service and hope it was informative for you. If not let me know what concerns you have and I will research the information you need.
Linda Hageman, RN
I was diagnosed with MEN1 shortly after giving birth to my first child two years ago. However, I have a very mild case of MEN1 (so far).
We do not know whether or not my child has MEN1. We do not want to subject him to genetic testing at his age. However, after learning that I have MEN1, I decided not to have any more children. If I ended up with a child that was very sick with MEN1, I would feel terrible that I had the child while knowing the risk of him or her having MEN1. Although I made this decision, I really wish I could have another child.
As MEN1 sufferers, what do you all think about having kids while knowing you carry MEN1?
In response to Susan Loso’s question about blood clots: I have not heard of any connection between MEN1 and blood clots, and if there were a connection I think I would know of it since I have both MEN1 and blood clots. My blood clotting problem is caused by another genetic disorder called Factor 5 Leiden. None of my doctors have suggested that Factor 5 Leiden or blood clots in general are linked to MEN1.
Insulin, a protein hormone produced before the pancreas and it
regulates blood sugar (glucose) in blood. Insulin is used for treatment of diabetes.
The hormone is synthesized in the beta cells, which stick into in hormone-secreting cells of the pancreas
and is called islets of Langerhans. The hormone is synthesized in the beta cells, which enter in
hormone-secreting cells of the pancreas and is called islets of Langerhans. The tete-…-tete “insulin” is from
the Latin insula – island, it indicates on the key origin of the hormone.
I too Agree with Vi. I too attended the MD Anderson MEN conference but was in different sessions so I was unable to attend the Genetic talk. Hageman Foundation for Multiple Endocrine Neoplasia is in close contact now with the Genetics Department at M D Anderson and in the near future will be having some articles on the genetics of MEN on this site. Dr. Gilbert Cote PHD is a Genetics specialist who works closely with MEN Clients. He and other MD Anderson Physicians presented Hageman Foundation for Multiple Endocrine Neoplasia at a World Conference in Italy a week ago. We are very please to have this support as we strive to become a more know organization, in the United States of America, for people who have MEN. Thank-You for posting on our page.
We are in the process of having a MEN Seminar Presented by Hageman Foundation in collaboration with Mayo Clinic, in Rochester, Minnesota, September 15-18, 2011. We have secured the Site, which will be at the DoubleTree Hotel. They have graciously donated the Seminar rooms at no charge. The DoubleTree Hotel is where we always stay while at Mayo Clinic. It is a very easy walk to Mayo Clinic and in the center of Rochester.They also provide transportation around Rochester at no charge. We have negotiated a reduced room rate for people who will want to stay at the Doubletree. We are working on programming at this time and would appreciate any suggestions anyone may have for a lecture.
The Mayo Clinic Physicians who work with MEN patients are going to make themselves available for appointment times if clients want to combine this Seminar with a check-up or new patient evaluations.
At this time we have save the date book markers and brochures if you would like us to send some to you or have suggestions about physicians who would like to better inform their patients about this Seminar just let us know.
We hope to make this a yearly event. There will not only be physicians speaking but also patients who are coming from other countries to tell their MEN stories in a different countries medical systems.
Have you been in touch with Dr. Moley at Washington University in St. Louis, MO? He is at the Barnes Hospital there. Dr. Lairmore in Texas will have info. on how to contact him as well as the team prior to Dr. Moley at Washington U that was also instrumental in finding the genetic marker for MEN 2A.
Please contact me if you need help. I can look up the information of the names of those doctors as well.
Thanks.
I have tried to contact him and did not get a response. He is probably very, very busy as I know he is very into MEN’s, but I will try again. Please if you could give me the info for Dr. Lairmore I will call him and try to make contact. Linda H
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Not sure if Terri is still checking in on the blog but I also live in the Atlanta area and have MEN1. 2 parathyroid surgeries and a full pancreatectomy. Terri – if you want to get in touch you can reach me at sken7239@gmail.com. I would certainly be curious to know which doctors you may be seeing locally.
Take care all,
Susan
Hello all…I also have MEN1. I have had 3 Parathyroid surguries…and a Carcinoid in my left lung, they removed my upper right lobe along with my left adreanal gland removed. I am seen by the Palo Alto VA hospital in CA. All they do is watch my blood for signs and ask me how I feel.
Hi Joe,
What kind of information are you looking for? I have many resources in my library that may be able to help you. Why was your left adrenal gland and Lung removed? E mail me directly if you want to keep this information off list. linda@hagemanfoundation.org Thanks for using our website Linda Hageman, RN
Hi Susan,
I too would be interested in learning about physicians that are in the Atlanta Area that are knowledgeable about MEN. I live in the East Tennessee area and I do know that Vanderbilt, in Nashville, has built a great Endocrine Surgery Department. In fact I have visited with them and was impressed by their knowledge and gentle care. Linda Hageman, RN
Hi you all
I live in canada and I am also the secretary/treasurer of Multiple Endocrine Neuroplasia Society Inc and I heard that the conference this year is at the mayo clinic in rochester from Sept 15 -18 2011
I would love to know if anyone here can help me find out if this is correct or if the conference is being held somewhere else
hugs
Hi Annie,
I have tried to email you and the emails have been kicked back for some reason. I indeed would be interested in speaking to you and getting our information out to people in Canada. I am hoping that you will return to the site again. American Multiple Endocrine Neoplasia Support that use to be called Hageman Foundation for Multiple Endocrine 501(c) 3 Tax exempt nonprofit is indeed collaborating with Mayo Clinic to present a MEN Seminar with one day dedicated to the Whipple Procedure. This will be our first seminar of what I hope to be able to produce around the country. Hope to hear from you soon.
Linda Hageman, RN
FOR ALL WHIPPLE SURVIVORS:
Please join our Facebook page. We have over 200 survivors helping each other. It is a closed group: Whipple Surgery Survivors Group.
Hi! My name is Johnny I was diagnosed with men1 back in 2000. I have had several surgery and schedule for a second surgery on my pancreas. Now the doctor told me that they also saw a tumor on my liver.