Behind the Mystery: Acromegaly
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- Опубліковано 25 жов 2020
- In a patient with acromegaly, he or she has formed a tumor from hormone-producing cells, producing too much growth hormones and driving the liver to produce IGF1 - and together, growth hormone and IGF1 cause metabolic changes in the patients as well as enlargement of the hands, the feet, the skeletal system, cartilage, and all of the body organs.
If diagnosed and managed early, the long-term comorbidities and possible increased risk for premature death can be reduced; however, the symptoms and signs often escape detection because of the nature of the illness. We'll hear from one patient who suffered for 12 years before being diagnosed and started Acromegaly Community to support other patients, as well as Dr. Blevins from UCSF who specializes in acromegaly.
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as a person suffers from acromegaly. unfortunately we never talk about the psychological state. we suffer from a physical appearance that is unacceptable to society, a dive of loneliness
Great job everybody! Thank you for filming this and helping educate the public about Acromegaly! ♥️ #acrowarriors 💪💪💪
Jill is awesome. I met her to this past year at the Acromegalia cofrence
Grateful for this, Jill! You, the doctor and staff did a great job informing and educating.
Thank you Jill for all that you do!!!
Well Done, Thank you Jill. I love when I can refer to a site that explains clearly what Acro is and what it does.
Jill thank you for simplifying my story, I can't thank you enough 💕💕💕💕
Bravo Jill Sisco pour ton engagement et ta bienveillance !
Thanks so much for this video!
Thanks for this, just diagnosed myself. I'm in good hands, just comforting to see its not just me.
Hi! I'm reading your comment. How did you know that's Acromegaly? I'm trying to figure out what I have if it's this or another disease.
Doctors most often diagnose acromegaly by ordering two blood tests that help determine if your body is making too much GH. IGF test. Levels of GH in the blood can change throughout the day. A reliable way to track GH in the body is by measuring the level of IGF-I in the blood.
My blood tests were normal but MRI showed a pituitary adenoma. they refuse me surgery and they don't want to believe my symptoms
I can relate to all those symptoms, specifically feeling ugly and uglier every day, as Jill mentioned on the video. Unfortunately for me it has been a constant struggle with doctors to get finally diagnosed with acromegaly. Because my IGf-1 is high and my GH not, to my endocrinologist I do not have the disease, despite having a micro adenoma. It’s a bit frustration seeing how you change every day, have more symptoms related to the diseases, and can do nothing because of a doctor opinion . I would like to know what is the criteria for them to take actions.
How can I get in touch with the community? I feel so isolated with this situation, listening to other experiences and learning about the disease frontiers would be more than appreciate it .
Hi,Jeny! I can relate! I've been struggling too. I have changed physically, looking uglier, I can't loose weight, nose bigger, nasal sinus (over eyebrows) swollen, etc. Plus more awful symptoms as enlarged lymph nodes enlarged in the neck that's painful, abdominal pain, etc.
I suspect if one has a higher glucose it's not going to suppress the growth hormone.
And the levels change, check several times between months the lab test and in different places..
I'm very tired of being treated by symptoms, not the complete picture..
I'm desperate! I'm in Mexico city, Mexico.
Greetings! Let me know how it goes for you.
That part literally broke my heart to hear her say that. A horrible feeling
I have the same issue. I was one of the good looking boy in my school and area but day by day I am looking uglier. Don't know why god done this to us and how to stop this. Does anyone know can it be stop after surgery?
Hi, please seek a different endocrinologist.
@@naturalnikki8675 I’m so scared of catching that disease.. even though I don’t have it.
I have acromegaly, I was going to the doctors for 8 years with headaches, it was not spotted until I physically started changing, I started growing muscles at 17 and people thought I was taking steroids, then after a couple of years I became weak and starred deteriorating, its left me with lots of medical problems, and my left eye became blind as the tumour crushed the optic nerve against the skull, my file is the size of a family bible, also its not really recognised like cancer or leukemia, at 25 it was diagnosed and I had my tumour removed, for 2 years after that I would not leave the house and it really effected me mentally, I did not recognise myself, I'm now 54 and still fighting acromegaly, severe joint pain, I csn no longer run, I doubt I get 4 hours sleep every night, I still work I will not let this bastard disease win, and of course women do not fancy you, its an awful disease, there is a link to anti depressants and acromegaly tumors, I've never taken them but my mother did whole I was in the womb, it was the 60s and doctors weren't as learned as they are now, hope ypu are all OK and keep going, don't live your life around the disease, peace to ypu all.
Pls anybody reply, I want to join this community
I have the same issue. I was one of the good looking boy in my school and area but day by day I am looking uglier. Don't know why god done this to us and how to stop this. Does anyone know can it be stop after surgery?
Guys ,im sure i have this one . Checked 10 years ago ,they said there is no tumor . During last 20 years i have noticed that im not changing only in periods when i dont do any sexual activity at all . And all this started when i started at 15 . But cant find any information about connection between those two processes . Tired of getting used to new face and head shape each few months . Lost everything . Couldn't finish university because of this . Bottle of whiskey and youtube are my only friends ) . But im trying to get out of this sht.
Me too having same issues , my tumor was removed last year but my GH and igf1 levels are still on the higher side .
Can anyone pls suggest me permanent solution.
My name is Amit and I am from India
Hii.. How r u now did you find any solution?
Bro did you get any help after surgery? Like vision issue or body growth any help? I am suffering from same e
@@worldcricketunited3433 where are you from?
@@anweshamishra4064 I think radiation surgery is the only solution
@@amitkhattri8088 I am from west Bengal.
You are still beautiful