I also have this! It’s so great to hear someone else’s story with MEN type 1

My daughter in law has MEN1 & my 2 year old grandson also tested positive positive ❤️‍🩹🧸 her dad & brother also have it

Imagine having a disease like this and living somewhere else, like Uganda or America, where the medicine is total crap. You'd go years without a diagnosis or treatment, and you'd probably die young and in misery.

Seefmrx

Herzliche Grüße aus Deutschland! Ich verstehe Dich sehr gut und bin selber betroffen. ✊🏻✊🏻✊🏻✊🏻🙏🙋‍♂️🙋‍♂️🙋‍♂️

Could have a made an interesting lecture

I was denied genetic testing and am now suffering with debilitating symptoms and it really sucks it really does. God bless you all dealing with this awful disease

Hi Kevin I hope u are doing well. I think I have it too but doctors don't believe me it's very difficult to live with having it untreated. I pray for u

I've had a recent diagnosis of MEN1. My grandfather, mother, and uncle have all died from it. I am only 30 years old but I am terrified. Being an American with no affordable health insurance I am not seeing any reasonable way to tackle this. Any info would be very appreciated.

These videos just make me more scared for my children

Is there a sister organization in the United States?

Looks amazing

Mines originated the head of the pancreas and metastasis everywhere

Excellent explanation Dr Chahal

Very helpful thank you

Thank You so much for sharing! I hope all the patients are doing well. It was really helpful to see this documentary as a medical student, I hope I will be able to diagnose genetic diseases sooner

Hi, I also have MEN1. Great information.

MEN 2 have pheochromocytoma which must be treated before any other procedures.

I have a nonfunctional endocrine tumor that is 2” x1-1/2”, just had a biopsy yesterday. I had the parathyroid surgery in 2004. I am wondering if the neoplasia tumor in my lower left lung is related to pancreas tumor.

Thrilled to announce that Claudia's film has been entered into the Smiley Movement's Charity Film Awards for 2021! Watch this space for voting links :)

A THATS MY NAME JOEL

May god bless you baby.. I will pray for you

Excellent lecture

U

Well done Megan and Molly xx

Well done megan and molly. Very proud cousin over here. Liam x

Is there any chance to contact somebody from the special team in order to exchange information about the adrenal tumor?

So good. Do You remember me? Hopefully you Can join Us! O_O

Thanks so much for talking about pancreatic neuroendocrine tumors. #LetsTalkAboutNETS!

Well done Jo. Xxx

He's wonderful and so so lucky to have such selfless parents 💛

What does up regulated and down regulated mean in terms of your research?

I've just been diagnosed with this and it is very scary. Still awaiting tests and results of some tests I have had.

Do you have anyone in Tennessee in America affiliated with AMEND?

Dr. Steve Ball, found your video on MEN1 conference 2017, very informative. You people are leapyears ahead of us as far as research and treatment are concerned here in Canada. I'm the Mother of a 36 year old male that suffers from the genetic disorder. His health has been deteriorating over this past 3+ years, and continues to worsen. Dec 2014 he was diagnosed with malignant nueroendrocrine tumour on his pancreas. In April 2015 he had a distal pancredectodmy and removal of spleen. Sept 2015 parathyroids removed from neck, minced and placed below neck due to high pth levels. Small tumour on his pituitary. 2016 problems with stomach. Diagnosed with GERD. Further problems with high PTH levels. Venus sampling performed at which time a tumour was found in a glad in his neck. This tumour is believed to be benign. Tumour also found in upper left quadrant of lung, not sure if it's benign or malignant. Dec 2016 endoscopic untrasound revealed malignant nueroendrocrine tumour on the head of pancreas which is all he has left. Oncologist decided to hold off on treatment and to observe, as it could affect the quality of his life. July 2017 hospitalized and diagnosed with pancreatitis. Scans performed. Swollen lymph node found on thyroid. Biopsy taken, results to be determined. There is only one facility here in Canada that I know of that deals with MEN1. My Son contracted them in Jan 2017 and was rejected, no reason given. I find it frustrating when we live in a Country and there's a facility available and resources under one roof and one can not avail of their services, given the nature of his rare disorder. He requires a multiple disciplinary team of Doctors, as you know so things are dealt with in a timely manner. Right now that isn't happening and a lot is falling through the cracks. Therefore he's on disability, his career is on hold, future looks bleak. As far as I'm concerned a better maintenance program should be available to him and he's sure not getting that at this time in his life. I have travelled to a third world country and received some positive results however they are only a temporary relief. Any information you or your staff could make available, would be greatly appreciated. Thanking you in advance ... email. [email protected]

Thanks for posting. Very comprehensive and thought provoking. I also watched the follow-up on pancreatic endocrine tumours. It would seem there is no defined map of progression possible right now, which I dare say we seek. But maybe it is just as well not to know and try to remain optimistic.A big thumbs up from me !

Very interesting and enlightening. Thank you for posting it. It would be wonderful if Mr Palazzo could also do a talk on the parathyroid which he also has expertise in. Primary Hyperparathyroidism is the 3rd most common endocrine disease yet there are no regulated guidelines for diagnosis and treatment in UK for people suffering symptoms and presenting with blood calcium less than 3. GP's are generally unaware of the condition and believe it to be very rare.