Singapore Scientific Programme Schedule

First I would like to remind everyone that in the course of discussion, baseball bats are not an appropriate response. Argument utilizing reason is.

I truly wish the organizers of this conference had reached out for help when confronted with this decision by the Health Science Authority, as I am certain we would have been able to provide strong arguments as to why this decision is wrong and why this prohibition is totally out of place at a conference that is specifically for patients and families.

I have received this message as an explanation.

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.

Ugh. This is so completely wrong. It contradicts everything that is well accepted concerning patient rights and embodied at the core of the Patient Bill of Rights, which I have posted under documents. I do not know if any such protection is given to patients in Singapore, but this is something that should be provided to every patient in every country.

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.

No patient anywhere should accept less and the fact that the Singapore patients have accepted the notion that they have no rights to information is a sad commentary on their own self esteem as patients. They, like all patients have a right to make their own decision about treatment and can only do this when they have full access to information. If the organizers had made this situation public as soon as they learned of this ruling, we may have been able to provide expert testimony from doctors and hospital administrators to support the concept of the Patient Bill of Rights.

This situation has opened a new awareness in me that not all countries have moved forward to this acceptance that patients have full rights to be informed of all aspects of their condition and all treatment options, and that in the end, only the patient can ultimately make any decision about his or her own health care.

I hope we can bring something productive out of this situation and to get things moving in that direction, I will ask patients from around the world to let us know what rights patients in their countries have. This is such an important issue and I hope we can get away from the negative issue here and turn it into something that can help advance the cause of patient rights throughout the world.

I also do wish to thank the conference organizers for their incredible effort to put on this conference, even though severely understaffed. Kymn, Derrick and Helen all deserve much thanks for pulling this off and I so wish that things could have gone easier and I do realize that there will be more disappointment coming for conference attendees who do not yet know of this decision. With that said, I offer any help I can give to the organizers in explaining to patients why they will not be allowed into some of the programs. We need to move on and make the most of this conference for all attendees.

Hope things are going well at the conference! 

Nice to hear from you Zaini 

Thank you kindly Maako 

Sharmin

Thank-you Maako.
 

We all need a soft place to fall,
I'm glad I belong to this group friends with some fantastic human-beings.
Always
Kathy.

Hi Kathy, Sharni, Zaini

A big hi. WE all are here. Andy , Shilpa, Simran have arrived day before yesterday. Imaan(Maako) has also reached I have spoken to her and we are meeting tomm. Mariam(Aysam) has got herself registered as well, I will be meeting her in the evening. Dr Marwaha and Manal are expected to reach in one hours time.

I have spoken to Kymn, she is well just very busy and tired. Has to be she has pulled it off singlehandedly. I had voulnteered  to help her for arrangements when I came  back  toi SGP from India after my son's spleenectomy,  but she had declined, being the kind soul she is.

Guess very soon after the conference we wil be saying All's well that end's well.

Cheers

Hi poo gill,
I am glad you travelled safe and now sharing with us about what is happening there,
It is also nice to hear  that all is well with everyone.
Looking forward to hear from Manal, about her  meetings,and her learning.

Take care

 bighug to everyone
from Kathy

Thank you everyone - you guys are great 

I am running to catch my flight - missing my kids before I even leave 

Thank you Kathy - your love, wisdom and ability to forgive is admirable.  We have much to learn from you.

Umair, thank you for your caring so much for everyone! 

I will catch up with you guys once I arrive in CA.

Much love and thank you again,

Sharmin 

To Sharmin   
Travel  safe.
Dont worry, your children are in good hands ,you could not fine better care,  for them, than their grand-parents
they will be having a ball.

There was nothing to forgive " I  was in the wrong to say what i did" ,My jokes wasn't funny for some .
Life is too Short to not to get on with one another.
Take care you are a lovely lady with lots of compassion in you.
Much love from
Kathy

Thanks Puja,

For an update,keep updating .

Zaini.

Thank you for the update Puja,  we look forward to hearing more from you!

Kathy, you are right I am having more seperation anxiety than my kids are.  They are getting away with so much more with
grandma and grandpa 

Your jokes are always funny to me    Thank god for your jokes - can you imagine the anxiety people would feel after reading all of the serious information surrounding thalassemia without the lightness of jokes  :'(   and not to mention the boredom  .   

please, keep making us laugh!!   

Love,

Sharmin

  This is so totally me  when ever i see a post with scientific terms,i have to force myself to read it,sorry guys,but i know i am dumb  .

Zaini.

Ok Zaini.
We will celebrate  the dumb day.
 At least you have enough intelligent to know you are dumb. .
Umair    not a word   she said it i'm just re-inforce it 

Count me in I like to join the group.

Kathy

Hey ! Girls and Umair & Narendra


A big Hi !

Sorry, could not post yesterday - was dead tired after the long day. However, you will be happy to hear that the conference is going great. 2 days are over, and guess what! yesterday  we attended all the scientific sessions and in the afternoon Derrik informed me that Parents and Patients have been offically allowed to enter. WE just have to fill an extra form like an undertaking that we are going to attend those programs. The reason the restriction was imposed on the first place was,  as medical faculty had some very descriptive presentations and pictures which someitmes they are not comfortable to share infront of parents and patients, given the contents. Neverthless that problem has been overcome, now we are free to attend all scientifc programs and you know what  - some of the stuff is a real eye opener. All the top Doctors of Haemteology are here and we can ask as many questions and clear our doubts. In case you guys want to ask something specific, please send me quickly so that I can ask for you.


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.

Now the conference -we had some good topics like oxidative stress. Please Please everyone of you should start immediately taking vitamin E. Dont miss it, it is very important to take a lot of antioxidants.

Another good product was discussed was Fermented Papaya, they say it is a very good antioxidant. It is suppose to show good results in clearing the body of free radicals. Only thing is it is not a cheap product, and we are discussing with them about the pricing. Andy wil be talking more about it as a product.

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.

I will get into the individual subjects later I guess, cos too much of information on this and I will need a lot of help on this from our other thal pals.

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.

Having said that awareness is slowly coming.  Patients from  developing nations Pakistan, Nepal, India and other developing countries have come to see what is happening in this area.

I spoke to a Dr from Greece and he told me that in Greece people cannot get married unless they get tested and have proof that  both of them are not the carriers. This is such a good rule, actually if we can get this implemented for other nations it will be so much better. Easier said than done though. For countries  as big  as India I am not even  sure how we can implement this. I am told  however, that in West Bengal (a state in India) it is being implemented.


Lastly the chelation therapy combining desferal and L1 is the best combination. it is giving best results. Chelation Chelation Chelation - please dont miss it.
 
Will keep posting.


Luv

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.


Thank  you to all  the lovely thal pals, for being there for me.

Puja,

Thank you so much for your post!  There is so much information and it is very exciting to know that there is a lot of potential to make things better!  Together we can do it! 

Thanks again,

Love,

Sharmin

OMG!! Puja, you are doing a wonderful job ,congrats 

Keep telling and posting,again i wish i was there

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.

A big hand for Kymn 

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.

I am sooooooooo jealous!!!  

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.

I think you are talking about "Huldi" ? right? Turmeric is called "Huldi " in urdu.

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.

Hello TIF   And a big hello to us all,what are we doing to bring people's attention towards thal.

Hey Puja, did you meet some one from Pakistan? any doctor? any patient?

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.

INSHALLAH ,hopefully 

 

Zaini.

Hey Zaini,

Yes, my grandma also talks endlessly about the benefits of 'huldi' - I guess it is a cure all.  Whether you eat it or
or wear it!!  When she fractured her back last year - she pasted it all over her back!! 
But it actually worked  Her pain subsided and the  fracture healed much faster than expected go figure..

It's time to pump our babies full of antioxidants!!

Sharmin