Well done. 95 people have now viewed your video on You Tube. I think it is well done and educates people without too much medical jargon.

thank you everybodyfor your comments im quite in awe of how my mini film has done and how its effect pp in the ways it has. jokey, i love you so much xx i hope everything goes well at the docs. i often have pains and think its my asthma, but then my heart jumps and thuds. im going to the doctors today about that. its so scary. lets see, holding hands again seems a good idea x and 2 days till mri,

i know, nearly 100 people. blimey. i would like it to get to thousands so i know th.at the world is seeing it but i dont know where else to post it.. ive sent it to everyone in my mailing list but they cant send it on at work as it is seen as spam!! gutted.

ok me a busy bee..lol i thought i would make a mini vid just on symptoms for my mum to understand. but she told me to put it on youtube aswell. so heres the link if anyone is interested.
http://uk.youtube.com/watch?v=DRv_bywPMg0

i cant believe it!!! i got a reply from www.pituatry.org
Hi Lisa, Thank you for contacting us. We would be very interested in watching your video and, if possible, working together to raise awareness about Acromegaly. Can you send a DVD copy to the address below (or a link to onlineaccess)? We'll do our best to have a look at it as soon as we can and get back to you. I look forward to hearing from you. Take care, -Kit

ok i spelt it wrong.... again
www.pituitary.org.uk

The video you posted on UTUBE was well done. I especially loved the backgound music.

Well done, I dont think people that have just been diagnosed with this, will have any problems with it, we really do need to get much more out there, I still dont know why no -one has not done a good television programmme about this disease, and put it on prime time TV.

Hey, Flouncy...with all the work Miss Oprah is doing on hormone levels and awareness maybe you should log on to oprah.com and send it to her. there should also be a link there for Dr Oz...if you submit it and the rest of us log in and mention this topic...It may get her attention and she has the ability to get it out there so that others that may go undiagnosed for years get help quicker...maybe worth a shot what do you think??? There is also another show on here in the U.S. called the Doctors (don't know if you get it there) and they talk about rare medical things all the time! Next thing you know we'll be wanting your autograph!!

Flouncy,

Well done on taking the Well done on taking the initiative to try and increase awareness of Acromegaly.

I don't want to be negative, but hopefully as you have asked for advice on the mini film then these are my ideas. I found the film somewhat disturbing.

Fist slide.
"Raising Awareness for Acromegaly (pituitary brain tumours)"
I would drop the word "brain" - a pituitary tumour is not a brain tumour. By calling is a "brain tumour" It makes it sound more scary.

Third slide.
"Do you know how it takes over your life?"
Erm, it's not taken over mine, and it's not going to. In 83% of patients with microadenomas an operation technique that has been performed since 1909 results in total normal hormone levels with no further treatment required.

Fourth slide.
"Acromegaly is a benign tumour in the pituitary gland in the brain". Mostly yes, but not always. I wouldn't say "in the brain" as such either - but at the base of the brain. (in the same way as my tonsils are!) :)

Seventh Slide
"..the symptoms of acromegaly can be very distinctive and unpleasant". I would say mainly, the symptoms of acromegaly go unnoticed for many many years - but if left untreated it can lead to complications and early mortality. Thankfully, it can be treated and the life expectancy brought in line with the normal population.

Ninth Slide
The picture of the chap is a copyrighted image from Elsevier Medical Dictionary (probably found via Answers.com).

Tenth Slide. "Headaches,loss of vision,...etc.."
I have none of the symptoms listed on that slide. The "weight increase" thing is wrong - generally acromegaly causes people to become leaner due to increased lipid metabolism. By reading that slide I could convince myself that I didn't have the condition (if I hadn't already been diagnosed).

Eleventh Slide "Could you live with that everyday? its hard but we acromegalics have to"
I don't live with that everyday. Acromegalics don't have to suffer it. A great many of the symptoms can be reversed after treatment.

Twelfth Slide
"How is acromegaly diagnosed?" Very often, a single blood test will determine is there is excess IGF-1 suggesting acromegaly, then a painless MRI scan of your head is used to determine the extent of the pituitary tumour. The "4 hour" blood glucose test your mention is generally a 2-hour test.

Fourteenth Slide ("drugs,chemotherapy and brain surgery are all options, all patients are different").
I think what you meant to say here was "medication, radiotherapy and surgery are all options, all patients are different". Surgery is generally up through the nose, so there are no scars, and very effective. (I think perhaps you were thinking radiotherapy when you wrote chemotherapy). :)

Fifteenth Slide
"Acromegaly just doesnt dissapear, we have to fight every single day. not only do patients suffer but family members do too."
I find this difficult to cope with when a great number of people have full remission after surgery, and others then can have the GH/IGF-1 values normalised with medication.

I do recognise and realise that there are a lot of people suffering with uncontrolled acromegaly or with the damage that happened before treatment. This is a real tragedy.

I think though, to increase awareness to encourage people to go sooner rather than later to see their doctor a different film needs to be made. The mini-film is a great idea though, and well done again on go to the effort to make it - it's a big step in the right direction.

Trystan
www.acromegaly.wordpress.com

thanx for your comments but im not changing it. this mini film was made with the knowledge that i have. apologies if ive been wrong and have caused offense, im no scientist or doctor..etc these ar beased on what i have been through and also some people i know who have this condition also.

sorry trys i must add also, that i did say that really people who havent had acro for that long shouldnt see it incase of being upset etc. and taking it too personally on thier own case.
i know saying brain tumour is scary but that is exactally what it is a benign brain tumour in the pituitry gland.and in raising awareness you have to be sneaky and catch the persons emotions to get the message accross, thats the way these things work. take childline etc.
what can i say, i must be wrongly diagnosed then as im over weight have headaces etc. as it states at the end of the film every patient is different and for more info to go to different sites. and also in some ways you are saying that i should take out the scary parts as you havent found it that hard, so acromegaly cant be that bad. when a lot of ppl fight everyday just to try and have a normal life, to get people to understand that life with acro can be hard at the same time as i have already said in the mini film it does say that every patient is different with symptoms etc, and i also stated that not all symptoms are stated.
and the blood glucose test about the hours, i think thats being just a tad picky. personally that is how long my blood glucose tests are and i think someone else on here has it for 3 and a half hours.
i wasnt trying to get it perfect, as really it cant be done as every single case is so different. take me for example who has a little tumour but has so many things wrong unbelieveable... and then someone who has a huge tumour and hardly any signs. so sneaky is acro!!
thats why i had to be so sketchy with some details.
sorry if i have affended you.

Flouncy,

No, you didn't offend me in any way whatsoever. You asked for advice on your acromegaly mini film, so that's what I've given you.

Like I said, if I had suspected acromegaly and watched it, then unfortunately I would have been convinced I didn't have it. More fool me then! :)

I'm not saying that you should take out the scary parts - but the "scary parts" are bits that are not correct. I'm not being picky, some things are just incorrect, that all. No biggie. :) It's not a "brain tumour", it's a "pituitary tumour". It's not "brain surgery" it's pituitary surgery up through a nostril. It's not chemotherapy, it's radiotherapy. And no, us acromegalics do not have to cope with these horrible things day after day, because the majority get total remission after surgery, and those that don't have surgical remission have it fully controlled with medication.

Take comfort in the fact that you've had lots of lovely encouraging comments on here and on Youtube, and I commend you too on having a go! Well done.

Keep smiling,
Trystan

Hi Trys This is a discussion board and its good everyone has their say also its a support group when people come on here they are looking for support because they have found they have been told medically confirmed they have acromegaly or they may be a family member a friend.Its a rare condition and alot of things are not known about this condition they are looking into what doxinex is doing eg you seem to have been medically researching this alot it sounds which is good but you are really overlooking the fact of the impact on peoples lives of living with this you say you are lucky well sorry theres plenty of people who are not so lucky and this condition should NEVER be looked at lightly I have sat with people and have been on this support group for a year and a half and although we shouldnt let Acromegaly rule our lives theres plenty of people who suffer Depression who are unable to work or work and struggle marriage breakups having to cope with symptoms even on drugs or after surgery .I feel you should get away from medical facts and look a bit more on the real impact of what this sneaky conditon does it may open your eyes up a bit more

Yep gotta agree with flouncy and Jockey, I don't think flouncy needs to change a thing, first and foremost it is a damn scarey condition when I was first diagnosed with Acro my GP said they thought I had a brain tumour not Pituitary, she said it was in my Pituitary gland.
83% of people that seems really high Trys, 4 years after my surgery I am still on monthly lanreotide injections.
The weight increase is another symptom, also there are other symptoms of Acro that don't just simply go because you have surgery as many of our mates here know including myself, can testify too as in mood swings and feeling alone,depression even.
I personally think Flouncy did a fantastic job making that video and in the time frame of it summed it up perfectly, it is a horride condition that doesn't need to be sugar coated.