WHAT IS YOUR FERRITEN LEVEL

Sahil,

You are like, already the winner  you can be a judge  another judge can be Smurfette  since you two have the lowest ferritin if i am not wrong ?

Zaini.

LoL Zaini 

Their should  not be competition among sufferers ,I think everyone is doing their best and everyone are winners for staying alive.

Lets not start that competitive business because we dont want to render some people inadequate in the fight with this illness ,
We need to assist everyone by encouraging them to do the best we can.
We dont need competiton to do this.

We are all in the same boat ,No one is better off.

Lets work together,


Kathy

Kathy ,
this competition is not to find a winner or the best Iron warrior icon .. its to motivate all thals to set a goal and then try to ahchieve that goal within the time limit you have selected. .it will motivate thalls to do their best to take their SF level in normal ranges within a specifiic time ...
it will motivate them to start agressive chelation to make tis possible within the time limit ....
this competition is not to find who is better but it is to challenge other that " you can do it within limit or not ?? "" or  " let's see who has the ability to achieve his/her targets within the time he/she selected " ... soo , wat i waant to explain here is, its not the competition like between arrivals  .. its a postive competition ...... may b i m wrong .. soo , please have ur say  & convince me or convince to me .... waiting for Andy and all other to reply and have your say ...

Take Care
Umair

Umair   You know best.
It was my point of view lats live it at that.
After all, I undestood what was going on, but I thought we could say it in a more positive way
Kathy

TCompetition can have both beneficial and detrimental effects. Many evolutionary biologists view inter-species and intra-species competition as the driving force of adaptation, and ultimately of evolution. However, some biologists, most famously Richard Dawkins, prefer to think of evolution in terms of competition between single genes, which have the welfare of the organism 'in mind' only insofar as that welfare furthers their own selfish drives for replication. Some social Darwinists claim (controversially) that competition also serves as a mechanism for determining the best-suited group; politically, economically and ecologically.

On the negative side, competition can cause injury to the organisms involved, and drain valuable resources and energy. Human competition can be expensive, as is the case with political elections, international sports competitions, and advertising wars. It can lead to the compromising of ethical standards in order to gain an advantage: for example, several athletes have been caught using banned steroids in professional sports in order to boost their own chances of success or victory. It can also be harmful for the participants, such as athletes who injure themselves when pushing their body past its natural limits, or companies which pursue unprofitable paths while engaging in competitive rivalries.
Source, Dictionary  Now   I will rest my case
Kathy

Managing thalassemia is a constant effort.  It is important to always stay on top of things and the key is to be preventative.  It is important to maintain a good hemoglobin (above 90) and to keep your ferritin levels down.  There are various forms of chelation available, the key is to use them and to use them right.  Our members need to find a way to make these chelators work for them, under doctor supervision and get their ferritin levels as low as possible.   

Sahil and Smurfette have made great strides in doing this, and we can all learn from them.  Firstly, their accomplishment shows us that it is possible and secondly, that it takes great dedication to do so.  As a group we are all dedicated to lowering ferritin levels of our members - and we are here to show you what chelators can be used and how they should be used in order for them to be effective.  If members share with us what they are currently doing and they are finding that things are not working our then we can guide one another such that we all see results.  Other than getting adequate, timely and safe blood transfusions - iron is the biggest challenge.  If thals are well transfused and chelated they have every reason to enjoy a full and healthy life.  What Umair has already done in recent months is absolutely amazing - I wish him continued luck. 

Perhaps, we can combine the different ideas that have been put forth in this thread - to set goals within certain time frames - that must be reached for your well being and you may surprise yourselves by reaching goals you did not even think were possible.  Let us also take into account what Kathy has said, in that we hold each other's hand and help one another reach our individual goals.  For those of us who have had success, we can encourage those that are struggling and give them advise to reach success as well.  The rest of us can help them find appropriate information and cheer them on during the difficult times.  As Umair has said - setting goals and times limits is also vital and we can make sure that we all reach them.  We are a group - and we a whole lot of history of successfully supporting one another to bring about miraculous changes.  Most of us have been changed for the better by this group and because of the way we support one another - each in our own way.  If we keep up what Andy has taught us to do we can't fail.

GET CHELATING, it won't be easy but it is very possible,

Sharmin

Zaini,

Little A's ferritin has varied between 1300 and 1700 during the last few months.  I am not sure how exjade and desferal are working together, whether exjade is releasing more iron into the blood stream than the desferal is mopping up    Nevertheless, his iron levels seem to have come down nicely and his transfusion requirement seems to have decreased as well. 

He will have a ferritin drawn tomorrow and I will post it.  We have a follow up appointment in Oakland in Februry, at that time he will have a SQUID scan again to determine what his iron levels actually are - I hope that the test will show that there has been a significant decrease in his iron since the last test (July 3rd).   I cannot describe the change in his skin color, his complexion has lightened many shades this suggests to me that there is much less iron in his body.  I hope Zainab has a lot of benefit from Asunra as well

I will update again really soon Zaini,

Sharmin

Good luck Sharmin,

With a mom like you,Little A's worries will also be little  .

Kathy,my dearest friend  the competition i suggested was never to hurt anyone,if you or anyone felt offended in anyway,i am sorry,

It's just that you know Umair and Jatin are quite young,and young blood loves to compete,when i saw jatin's levels,i was really worried,having that much iron in your body is not good,Umair is doing much better bringing his ferritin down,so as i am a mom,i feel for them,and i just know that kids love competing,i said my daughter won't be suitable for the competition,but when i told her about she was like "Yes mama,i am going to make it " and i have told her that not winning is not loosing,it's just stumbling on your  way to winning,keep going and one day you'll be the winner.

I know no one is better then the other here,since we have members who are doing there best with possible available resousrces but we can not ignore what Sahil and Smurfette have achieved through determination,they are like role models for other thals,i hope one day my daughter will be with them,with below 1000 ferritin.

So my dear Kathy, i totally respect your point of view,but it was just to give all thals a positive motivation.

Take care,

Zaini.

The only important thing here is that we manage to encourage patients to be more faithful about complying with chelation. The examples of those who have worked hard to get their iron down are many. Smurfette, Sahil, Aston Dialo, Masuma (reversed congestive heart failure!), Kats, Helen, and on and on, all have something in common. They have been "religious" about chelation and all have low ferritin. This is the goal we have to encourage all to work towards. It is possible, even when neglect has been the previous pattern, but it takes dedication and work and any support we can give, should be given. If it is put in terms of a competition, the winners are every single patient who lowers his or her ferritin level. If anything, they are competing against themselves and the habits that led to high iron. The race is on and keeping yourself alive is the prize.

Dear Zaini.


I was not upset. I understood what you and the rest meant but at the same time I just wanted us all to understand that the wording could have been better.

AS I mentioned we all are trying the best we know how.I respect you too and no need to apologize.
Take care sweetie we are a team.

It very important for all to comply with chelation we all agree,
 Kathy

the winners are every single patient who lowers his or her ferritin level. If anything, they are competing against themselves and the habits that led to high iron. The race is on and keeping yourself alive is the prize

.

 

manal

Ok, please forgive me that I haven't read all new posts.

Year in year out I had bad luck with chelation, because of the late start of real chelaction (at the age of 16,/5.5 year ago) and allergies.

I'm happy to tell you that it seems that luck is becoming more and more my friend. The income and outcome is the same.    .

Ofcourse I will support others. don't worry  !

Hi buddies ,
soo ... everything is ok now ?? ... i think yes ... everything is okiey now .. gud ....

Take Care
Umair

Hi guys,

Little A's ferritin level today was 1770.  I was hoping that it would have been lower, but he just started the full dose of exjade in mid October so it has been less than 2 months.  I hope that his ferritin will drop further soon.  I also hope that the SQUID scan in February shows that his actual iron levels are lower than this, as I had said earlier his skin color has changed very significantly.  I am very glad that he is much lower than the 2880 value he was at earlier this year. 

I'll keep you all posted:) 

Sharmin