Patient / Parent / Supporter
Name badge, conference bag, programme cum abstract book.
Admission to all scientific sessions at the 11th International Conference on Thalassaemia & Haemoglobinopathies and the 13th International TIF Conference for Thalassaemia Patients & Parents (excluding the Pre-Conference Workshops) and trade exhibition.
Invitation to opening ceremony.
One lunch and two tea breaks per full-day conference.
Certificate of Attendance.
Andy, the kind of organization you speak of that helps people - I think that we have that kind of a community right here:)
Okay Andy, then i will be there and we will all make a big noise togather :bat :bat :bat
By the way, i received an invitation to the opening cermony, did any of you get it? thought that attending the opening is the default since we registered so why we need invitations, isn't it????
Ironically, it said that the conference main theme is ''equal access to quality medical care to all thal patients'' ... shouldn't we have first equal acess to lectures!!!!!!!!!!!!!!!!!
manal
Sharmin What about this posting what is the difference between my jokes and this one.
If you are going to be picky and started to tell me what and what not to post,
I shall stop posting.
Kathy
Andy's research and advice has changed my life and countless other lives.
And I could go on for days about those who get the worst care and the reason I made India my first conference was to try to emphasize just that. More Indian children die from thal every year than anywhere else on earth. Far more. These people will not be represented at the conference. Yes, there are Indians coming but they can tell you themselves that by far, they are the very lucky ones. I haven't heard of any TIF conference planned for India.
It is so completely ignorant for your government to have these restrictions when one can turn on ER or Scrubs and be treated to in depth medical knowledge on a regular basis. What is needed is someone who could make this case to them in a persuasive way. Perhaps you should have done like others and asked for my help in providing a persuasive argument while there was time to do so. I do write a good letter and can back up arguments with reason and can even point out inconsistencies in government arguments. By the way, these are SCIENTIFIC programs, not medical. That is why it is called Scientific Programme. Is science also prohibited to the masses?
The reason for this strict rules and regulations is to protect the lay people as they are not medically trained to make an informed choice for themselves.
The patient has the right to obtain from his or her physician complete current information about diagnosis, treatment, and prognosis in easily understandable terms. If it is medically inadvisable to give such information to the patients, it will be given to a legally authorized representative.
The patient has the right to receive from his or her physician information necessary to give informed consent prior to the start of any procedure or treatment. Except in emergencies this will include, but not necessarily be limited to, a description of the specific procedure or treatment, any risks involved, and the probable duration of any incapacitation. When there are alternatives to therapeutically designed research protocols, the patient has the right to know about them.
Sorry I forgot Kymn (Eponine)was damn write about the whole conference. Her efforts and hardwork show. It is commendable what she has pulled off. Way to go Kymn!. Also Kymn before i forget please post your scuba dive pictures for the all the thalpals to see.
Overall we are having a ball. We had a party on 7th night, at my place, which was graced by the presence of all the thal pals. Manal, Mariamm(Aysam) with her daughter, Maako(Imaan) and her friends , Andy, Shilpa, Simran, me - poogill(Puja), Dr Rk Marwaha. It was really nice to meet everyone IN PERSON, though for the first day I was getting confused with their thal pal name and their real nameS. Dr Marwaha was very very impressed with our knowledge and dedication about thalassemia us and was surprised that we have never met each other before. It was not feeling at all that we met for the first time, it was like we just started our conversation from where we left off. Mike missed it and some of the other thal pals like ronlald, as I was not aware they are coming.
Also a totally new antioxidant which I found out is turmeric(cucurmin), i think I have spelt wrongly. I know it as a product as it is used a lot in Indian cooking on a daily basis but i dint know it was an antioxidant.
One more important thing, which was covered by Sir Dr Weatherhall is that Thalassemia is not even in the GBD2005. For people like me who dont know wht GBD is, it is Global Burden of Diseases 2005. Thalassemia has to be get into GBD then only we will have the funding from NGO's and people like Bill Gates and OPrah can actually help the research for thal. Funding is the actual stumbling block as of now for research. Once we are in GBD atleast people will look at thalassemia as a serious thing and progress on research will be faster.
It has been exactly 6 years to the day when I found out tht Prat had thal. I was heartbroken then but not anymore. I pray today that we wil be celbrating a cure very soon.
Hey Puja, did you meet some one from Pakistan? any doctor? any patient?
Manal,
Hey you look Goooooooorgeous :biggrin
You too are really cute Imaan :hugfriend .
Zaini.
bilirubin total 5 lymphocyte count 9.2[/pre]
c3d T cells 15.5
bilirubin (conjugated) 2
CD4 T HEPER SUBSETS 3.22
PLASMA PROTHROMBIN TIME 15.3
APTT 38.6
ANTI TTG ANTIBODY 5*
aspartate txaminase 80
VITAMIN C 57
alanine txaminase 134
gamma-glutxferase 16
alkaline phosphastase 165
calcium 2.48
magnesium 076
phosphorus 181
glucose 5.1*
albumin 49
globulin 29
a/g ratio 1.69