could this be the next awareness slot for acromegaly?
i cant believe it!! ok so this morning i get an e-mail form kit who is part of the pituitary foundation.org.uk asking if i want to take part in an article about acromegaly. she said that the journalist is well known form the independant and the guardian (uk) newspapers. and she wants to talk to someone who has got acromegaly. to my surprise kit said that she had passed my video on youtube to the journalist to see what she thought. apparently she loved it and said that she wouldlike to talk to me. OMG!!! ok so about 5 mins ago i spent 16 mins on the phone to the journalist talking about how i got diagnosed my symptoms how it made me feel, etc etc. she said that at the moment it is just an idea she is putting forward to the editors or whatever i cant really cant remember who she is telling about it i know its someone who runs the paper. well she said that even if she cant do a whole page story on it in health bit. that she will run an article any way somewhere else in the paper. jon i would really like your advice on this as i know you have written for the independant. what does this entail for me?? she said something about the whole back page of health and a photo too. good thats half the page taken by my head...lol.she sounded lovely on the phone and had her kids running about herslef and we got on well over the phone. i really hope that they like her idea and we can get more awareness out there. my god i will make sure that she mentions the hardness of bringing awareness about acromegaly. the fights we all have to make everyday. the tests the hospital appointments, doctors appt, life in general. fingers crossed everyone that this article can be made. hopefully people will see and think to get help or see thier doctor if they have any worries than just leaving it for another time.
Replies
Way to go Flouncy!!!! WOW!!
You know, just last week, i had a relaps from acro and i felt like a very old man..I was so tired, achy, and out of breath..Some people think i just try to find ways to have things easy..I get SOOO INSULTED when that happens!!! The last two years before doctors found out i had Acromegaly, i was very sick, weak and tired..I had complaints at work for being lazy, and today, some people still think i am.. Your story will PROOVE that us acros don\'t have it easy living with that culprit in our bloodstream..
Even if our horror-mones are back to normal and controled after treatements, our body had a big hit and we have to live with that..THAT is the MOST important thing i need for people to understand!!
I hope your story rings some bells in some people\'s heads!! Congradulations on your achevement!!
Your friend , CoolCat
Flouncy, so proud of ya mate,I think that\'s fantastic,you\'ll make a wonderful spokeswoman for us.wtg.
Big hugs,
Fay.xx
YEAH YEAH how cool is that Flouncy....you rock!!!
thank you so much. i cant believe it still i really have my fingers crossed that they agree to run the story. i will keep you all up to date with any news i get. if anyone wishes to write to me and get some common factors of acro accross so i can kinda get in the article if i can. like coolcat said when horrormones are back to normal it doesnt mean we are fine. infact at the moment im far from that. im tired again all day my arms are hurting again and if i take the pooch for a walk then my legs hurt and i dont go very far...lol headaches are coming back im generally feeling crap again. and my levels are just below the normal line for my age. for my age it should be between 20 and 60 and my levels are 40.2. i think i need another blood test to see if the drugs arnt working any more. my god i go off track dont i.;...lmao i will try and get accross as much as i can i have already told her about having to quit my job, gave it the big symapathy vote with not being able to pick up my baby last year as my arms hurt so bad and that was very depressing. cried when giving my story of the bullying in the shop last year also. so it was emotional and i want this story so much to get awareness out i will do anything to get it!!! lol
Flouncy, you are making some really cool things happen. Kudos. It seems like a good idea, too, to organize your thoughts if you can and try to be sure to cover as many points as possible. You might even help the journalist out with suggestions of web sites that could shed some light such as the wrongdiagnosis.com one. I\'ll be looking forward to seeing how this develops. Hugs, Rose