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AMEND3
United Kingdom
Приєднався 18 чер 2013
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a charity (no. 1153890) registered in England and Wales which provides information resources and support services to families affected by multiple endocrine neoplasia (MEN) disorders, raises awareness of the conditions with the medical profession, and encourages (and when possible funds) research into MEN disorders. Membership and all resources are provided for free. We receive no government funding and rely entirely on grants and donations. Visit our website for more information: www.amend.org.uk
Keep on Running! with Steph Webb - a 2024 Webcast
Steph, an MEN1 patient and AMEND member, is undertaking a minimum of 7 running challenges throughout 2024. AMEND CEO, Jo Grey, chats with Steph about her motivation, the considerations needed in relation to her disease, and more.
Переглядів: 17
Відео
Corticosteroids with Professor Karim Meeran - a 2024 AMEND Webcast
Переглядів 264 місяці тому
Professor Karim Meeran from Charing Cross Hospital in London, discusses all things corticosteroids with AMEND CEO, Jo Grey. Corticosteroids (such as hydrocortisone and prednisolone) are prescribed for a variety of reasons, including for adrenal insufficiency after bilateral adrenalectomy, or occasionally after pituitary surgery. #corticosteroids #MEN1 #MEN2 #MEN2A #MEN3 #MEN2B #Adrenalinsuffici...
NETs in RETS Webinar with Professor Karim Meeran
Переглядів 20710 місяців тому
In honour of NET Cancer Day, Professor Karim Meeran explains the relation between this annual awareness-raising event for neuroendocrine tumours and cancers (NETs) and the AMEND patient communities of rare endocrine tumour syndromes (RETS)
Yoga - 60 Mins All Levels
Переглядів 43Рік тому
Lizzie Dunn, our volunteer yoga provider at our Annual Patient Information Days, brings you a 1-hour yoga class to try at home. This is for all levels, including beginners who may not have tried yoga before. It is not suitable for chair yoga. Make sure you are wearing comfortable and loose clothing and use a yoga mat on the floor. *If you have recently had surgery or currently have a hormone-se...
Me, My Mum and Dave
Переглядів 78Рік тому
Myleene, helped by her mum and Dave the ladybird, explain genetics and the need for hospital tests in the simplest way. Myleene and her mum have PGL syndromes (phaeochromocytoma & paraganaglioma syndromes). This cartoon is suitable for children from age 5. Funded by AMEND for our Phaeo Para Support UK group (www.phaeoparasupport.org.uk) Produced by Mister Munro (www.mistermunro.co.uk/) Launched...
2022 100km Jordan Fundraising Trek
Переглядів 147Рік тому
A start-to-finish film about our Petra Plodders' 100km trek through the wadis and desert of Jordan to the ancient city of Petra. The trekkers raised over £14,000 for AMEND in the process!
MEN1 - My Story: Steph
Переглядів 3 тис.2 роки тому
How to you cope with being diagnosed with MEN1 when you've had no symptoms, and no one else in your family has the syndrome? When family members can't understand what you're going through, that when AMEND can help. Getting out into nature helps Steph to process the ups and downs of MEN1, and regular monitoring of her pancreatic neuroendocrine tumour gives her reassurance.
MEN1 - My Story: Emma
Переглядів 11 тис.2 роки тому
After parathyroid issues in her 20s, when Emma began to experience other symptoms, she used her skill as a GP to put the pieces of the puzzle together. She asked to be tested for MEN1. Despite her medical background, Emma's initial feelings about her diagnosis were similar to anyone else newly diagnosed with MEN1. Thankfully, she finds great comfort in running and yoga.
MEN1 - My Story: Kevin
Переглядів 1,7 тис.2 роки тому
When Kevin was diagnosed with MEN1, he was terrified about how he would tell his family, and whether his four children would have inherited it from him. The support of his wife, Camille, and AMEND's resources for children, gave him the strength to do so. Humour also helped Kevin. When the doctor broke the news that he had pancreatic neuroendocrine tumours, Kevin asked, 'How long do I have left....
Living with MEN2A - TREATMENT
Переглядів 5202 роки тому
In the second of our films about MEN2A, we hear what treatments Liz, Laura and Mandi have experienced since their diagnosis. Find out how they came to terms with their treatment and how they feel about the possibility of more in the future. Produced by Red Goat Productions thanks to a grant from Ipsen
Living with MEN2A - FUTURE
Переглядів 3892 роки тому
In our final film of this series, we discover how Liz, Laura and Mandi feel about the future with MEN2A in their lives, and about the impact that the condition has on other family members. Produced by Red Goat Productions thanks to a grant from Ipsen.
Living with MEN2A - DIAGNOSIS
Переглядів 1 тис.2 роки тому
We introduce you to Liz, Laura and Mandi who were all diagnosed with MEN2A (MEN2) in different ways. Find out what it's like to hear that you have a lifelong genetic condition, and how Liz, Laura and Mandi dealt with the news. Produced by Red Goat Productions thanks to a grant from Ipsen.
Travelling: Cameron
Переглядів 1543 роки тому
Cameron talks about his attitude to and preparations for spending several months travelling in 2019. He sees the benefits of being diagnosed with MEN2A as a baby and having a prophylactic thyroidectomy at just age 3. To read Cameron's full interview and for more resources for young adults affected by multiple endocrine neoplasia disorders visit, www.amend.org.uk/patients/young-adults/ For resou...
Surgery: Claudia
Переглядів 16 тис.3 роки тому
At just 17, Claudia struggled with being diagnosed with MEN1 and being told she needed surgery, even though she felt fine. Despite facing further surgery, she is looking forward to starting a new job and getting married! To read Claudia's full interview and for more resources for young adults affected by multiple endocrine neoplasia disorders visit, www.amend.org.uk/patients/young-adults/ For r...
10 @ 10 Mindful Mondays Part 6: Be Kind to Yourself
Переглядів 244 роки тому
10 @ 10 Mindful Mondays Part 6: Be Kind to Yourself
10 @ 10 Mindful Monday Part 5: Breathing for Mindfulness Practice
Переглядів 134 роки тому
10 @ 10 Mindful Monday Part 5: Breathing for Mindfulness Practice
10 @ 10 Mindful Mondays Part 4: Mindful Moments
Переглядів 234 роки тому
10 @ 10 Mindful Mondays Part 4: Mindful Moments
Introducing SDH Syndromes - Treatment
Переглядів 2 тис.4 роки тому
Introducing SDH Syndromes - Treatment
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.
Same boat. I HAD insurance when it first started, but that was years ago. Now I owe all the doctors money and they won't see me.
These videos just make me more scared for my children
Is there a sister organization in the United States?
We do have an affiliated org in the US: amendusa.org/
@@AMEND3 Thank you!
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.
I think I may have it. Not diagnosed yet. But, I had a benign pancreatic tumor age 20, and benign growth on my back I just had removed. My dad has the growth on his back too. Also, I have had severe anxiety, adrenaline dump feelings. I think my adrenal glands could be involved.
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?
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.
We always recommend a visit to our website if you need any more information - always happy to help: www.amend.org.uk/patients/information/men-1/
How are you? I haven’t been diagnosed but I’m under suspicion of men1. I had a prolactinoma, my dad had a gastrinoma, my sister had a parathyroid adenoma.
@@sharonsmith4659 How r u? I am under suspicion too. I had parathyroid adenoma. But no one in my family is diagnosed of having any other disease yet. But doctor doubts there is a chance for MEN1. Its a little bit scary. How r u doing now? Have u done any blood test or something for screening?
I have had MEN 1 for at least 30 years. The big thing is just keep up with medical issues. I had the parathyroid surgery, which is pretty easy. I am facing surgery on my pancreas now, just had my pancreas biopsy yesterday.
Sorry my english isnt well: I have very high prolactin and testosterone (symptoms because of that)and maybe cushing syndrom.im always tired and have bad memorie and cant concentrate.and i have a cystic pituarity.soon i have the meeting with the doctor an the special investigations. im afraid if i have the same.how can i be sure if they make the investigations in detailed way?what if i have men 1?
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. colleen.cmkenny@gmail.com
Dear Colleen, apologies for taking so long to acknowledge your message; however, we don't routinely check for messages on our UA-cam channel. Sorry to hear of your son's problems. For more information on MEN1, please do visit our website (www.amend.org.uk). To ask any questions, please email us at info@amend.org.uk and we will do our best to find answers for you. Kind regards.
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.