1st Pan-Middle Eastern Conference on Haemoglobinopathies ..May 2009, Syria

I got to know from our association that it will be held on the 1st and 2nd of May. Schedual is not yet announced. I am now investigating the possibility of going there or not, i will let you know.

They are again announcing about sponsorships, check the link
http://www.thalassaemia.org.cy/pan_me.html

manal

Manal,

Let us know if you will be there, we always learn so much from you when you attend these conferences.

Sharmin

hi manal hi everyone
long time i havent posted i have been so busy
i have been looking after four kids and my 5 the kids i am a carer for they have no famaly so you can all imajine that i have been to busy 9 kids very hard to go online
aysam,  well i was told last transfussion that his iron hasnt went down much they said it has gone down but much like 500 grams only he iron is still over 3000 i am going hopefully in april to lebaonon its final i just couldnt get up and leave as i dont have a job there and many other issuies i needed to make sure if i am going to lebaonon it will be for a long time this is why i didnt go yet remmeber in austrlalia everything is for freein lebaonon it will cost $5000 month just for exjade and $1000 for treatment so i needed to make sure i am able to do this now i think i am ready in april and i will stay in lebaonon becuse they just dont knowaysams couler has changed he looks like drker know like i dont know pale ans dark i think its due to his iron his liver test are playing up they go high then low i dont know if this is going to affect him long term i dont know if any that is happeing tp aysam will affect long term i hope not i read about the syria confrence manal whats all this about ?
worth going ?

Hi Mariam, i really missed talking to you

I wish you all the luck in your trip and hope tht all Aysam issues will be clearer there.

As for the conderence, i don't have the details or the programe now, but i will update you once i have them

Big hug for you and the kids

manal

hi manal hi everyone
long time i havent posted i have been so busy
i have been looking after four kids and my 5 the kids i am a carer for they have no famaly so you can all imajine that i have been to busy 9 kids very hard to go online
aysam,  well i was told last transfussion that his iron hasnt went down much they said it has gone down but much like 500 grams only he iron is still over 3000 i am going hopefully in april to lebaonon its final i just couldnt get up and leave as i dont have a job there and many other issuies i needed to make sure if i am going to lebaonon it will be for a long time this is why i didnt go yet remmeber in austrlalia everything is for freein lebaonon it will cost $5000 month just for exjade and $1000 for treatment so i needed to make sure i am able to do this now i think i am ready in april and i will stay in lebaonon becuse they just dont knowaysams couler has changed he looks like drker know like i dont know pale ans dark i think its due to his iron his liver test are playing up they go high then low i dont know if this is going to affect him long term i dont know if any that is happeing tp aysam will affect long term i hope not i read about the syria confrence manal whats all this about ? worth going ?

Wauwie, it sounds that you really do a good job. Nine children, how can you handle that?! Between which age are they? Is Aysam your biological child? I hope they all doing well and Aysam feel soon better. Trust me, I know how annoying it can be if the Fe stays high. Lebanon most be a beautiful country and I have heard a lot of good stories about that doc. I hope you will find a way to deal with the high prices of the meds. Take care and I wish you all the best from the Netherlands, Dore 
p.s. means the name Aysam something? I like the name

Mariam Sis ,
BEST OF LUCK FOR EVERYTHING Message for Aysam ,....

Best Regards
Take Care
Umair

The scientific programme is announced now and it mentions that Dr. Sadelain will attend too
http://www.thalassaemia.org.cy/pdf/scientific_programme.pdf


manal

Manal,

That sounds great!  I hope that Dr. Sadelain will attend.

Sharmin

hi all yes aysam is mine i have five children of my own four grls and aysam da only boy the other kids were my neighbours kids i didnt just go out and ask to look after a another four but the goverment took them from there mother and father becuse of abuse and neglet and they are 9 bro and sis i took in four and my mum one my freind three and one was given to somene else i took them in cuz they havent anyone at all  no famaliy there ages are 7yr old girl 12 yr old girl 11 yr old boy and 9 yr old boy they all have special needs so i felt so sorry for them they wre going to be given to other ppl and not toghether so we toook them in i did it becuse of aysam if i do good maybe god willl help me it is vey hard to do but they are wonderfull children all of them i have had thm now for three months now dont know eht will happen next

manal i do want to go to the syria but is it worth it

and you guys mentioned the doc taher good things about himplease tell me what

Mariam, I am really so touched by your attitude. May God reward you with all what you wish, it is really a hard job, may God bless you dear

As for the conference, according to the programme, it seems interesting ,but sometimes as you know sometimes important lectures are cancelled or doctors don't atttend for a reason or another. But in my opinion, attending conferences will definetly add to our knowledge especially in the management of the disease and it is always good to meet the est doctors in the field.

Usually there are small things or tips that you get to know from conferences. Most of these things are not discussed in clinics for a reason or another but knowing them is so important. I can not neglect what i learned when i attended the Singapore conference ( for example the importance of antioxidant and their kinds, supplemention and nutrition...), so i guess if you have the ability to go, don't miss it

manal

Mariam,

I highly commend you for what you are doing for those children, that is truly amazing and wonderful.  May you have all the strength and patience in the world to take care of all of the children in your care.  May little Aysam be blessed with good health and a long life. 

Sharmin

You are amazing Mariam  i am sure God will reward you here or here after,Aysam is very lucky to have you as a mom  .

Zaini.

THANKU ALL
for yor nice comments i am doing only what i think you all will in my case
AYSAM TODAY is looking very pale so i took him to hostpial i did i blood test
GOOD NEWS IS THAT his liver is very good going down
BAD NEWS his hemaglobion is 10 and only two weeks ago he put blood so we are tranfussing in a week
VERY BAD NEWS HIS FERRITIN LEVELS 3400 not comeing down
i dont know the long term complications on this i am so confussed why his dose is up and he takes it on time why >? its so high always

Hello, I am very touched by your story. You are amazing and a very good person/mother.
I am sorry to hear that his hgb has dropped and the ferritin stays high. I dont want to make you worried, but there is a type of iron overload what only affects little children. Thats all what I know about it.

Best wishes, Dore

what type of iron im not paniced i swear plaese tell me i need to do some resach