Just joined in ...

  • 15 Replies
  • 14985 Views
*

Offline Yenny

  • *
  • 13
  • Gender: Female
Just joined in ...
« on: September 19, 2006, 05:51:33 AM »
 :hithere
I'm Yenny from Indonesia. I'm new here. :smile2 Really glad to found you guys here! We thalassaemics in Indonesia (especially in my hometown as far as I know) are likely kinda say... strunggling alone here, :banghead and it means there's not much we can do in fighting thal, you see!
That's why I'm so happy to get the4 chance to join you all here! Here, for you all :flowers

To be quite honest, I'm kind of confuse right now, as I got so many information from your discussion forum ( now ours, if i may say so?? :blush ), which are mostly new to me or those i knew so little about before. :huh :what
You see, we don't have many source-of-help for this kind of disease in my country. Even if there is related medical information, it's kinda floating one, it's not really clear & making us even confuse than ever! :confused
So when I learned from your discussion that there's so much more about thalassaemia, I'm kind of confused where to start getting to know it better & to learn how to handle mine. Will you guys help me? :candle :pray


*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Just joined in ...
« Reply #1 on: September 19, 2006, 07:43:41 AM »
Hi Yenny and welcome to the group,   :smile

We will try to help you understand as much as possible about thalassemia. Our forums hold a wealth of information and experience and our members are always happy to help each other. Ask us any questions you may have.
Andy

All we are saying is give thals a chance.

*

Offline jzd24

  • ****
  • 372
  • Gender: Female
Re: Just joined in ...
« Reply #2 on: September 19, 2006, 02:29:20 PM »
Welcome to the group, Yenny!
      We will try to help in any way we can, and support you 100%. We are all in the same boat. In many places there is little knowledge of thalassemia, and services are inadequate or poor. We try to overcome that by helping each other out as much as we can.
     Do you have thal major, and do you get regular transfusions? What kind of chelating drug do you use?    :hithere   Jean

*

Offline Christine Mary

  • ****
  • 255
  • Gender: Female
  • Mother of Lauryn, who has Thal Major
Re: Just joined in ...
« Reply #3 on: September 19, 2006, 03:22:17 PM »
W-E-L-C-O-M-E :hug.

THIS SITE IS GREAT YENNY! YOU ARE GOING TO LOVE TALKING TO PEOPLE ON HERE!!!

 :bigCHRISTINE

Lauryn's Mom

*

Offline Maako

  • ***
  • 178
  • Gender: Female
Re: Just joined in ...
« Reply #4 on: September 19, 2006, 05:38:31 PM »
hi Yenny,

 :hithere too.  :biggrin and welcome to the site.

dont ever think that ure alone in ure struggle because we are all here with you.. and if you are confused about anything just ask.. all of us would be more than willing to answer :smile2

tc

Maako
Maako

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: Just joined in ...
« Reply #5 on: September 19, 2006, 11:06:20 PM »
Hello Yenny  :hug

Hope you are fine and good today.

Welcome to your new family .We are there for you
What type of thal you have? I think this is the first thing we should know then step by step you will understand all the details you wish to know.
Wecome and take care
 :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
Manal

*

Offline Danielle

  • Beta Thal Major
  • *****
  • 848
  • Gender: Female
Re: Just joined in ...
« Reply #6 on: September 20, 2006, 12:52:15 AM »
Welcome to the group, Yenny!  Good to see you here!   :bighug

All of us are here to help, so don't hesitate to ask us anything.   :hug

*

Offline olivia

  • *
  • 12
  • Gender: Female
Re: Just joined in ...
« Reply #7 on: September 20, 2006, 10:01:40 AM »
Hi Yenny,
Welcome to this group. This site can really help u to understand a lot about thal. And there's a bunch of very friendly people sharing all informations and experiences here. You will definitely love it! ... Take good care of yourself ya.
 

*

Offline Nur

  • ***
  • 159
  • Gender: Female
Re: Just joined in ...
« Reply #8 on: September 20, 2006, 03:44:57 PM »
Hi Yenny,

I'm glad that you have found this group. Welcome  :smile2. I am a Thalassaemia too and has been suffering it for a long time. I am still learning too because what i used to know maybe not the same as what i knew now. It keeps on moving towards a better lifestyle with new drugs, treatment and everything. so don't be afraid to ask.  :love


 :hithere
Nur

Re: Just joined in ...
« Reply #9 on: September 21, 2006, 03:21:35 AM »
Hi Yenny .........

Glad to see that you found this forum!! It's a really great site!!
I have just joined today but I have been reading some of the messages from this forum.
It's very informative as well as supportive! :)

Well, a bit about my self, my name is Dian and I also from Indonesia, Jakarta.
I don't suffer from thalassaemia but I volunteer weekly in the Thalassaemia Society of Victoria (www.tsv.org.au) in Melbourne, Australia and I study genetics.

I read from your profile that you are from Pontianak.. I'm not sure whether you can travel to Jakarta but while I was googling, I found a few sites about some institutes that may be able to help you and they are located in Jakarta.

The sites are:
http://www.tabloid-nakita.com/artikel.php3?edisi=02059&rubrik=teropong
http://www.eijkman.go.id/app.x/Layanan/Genneka/Thalassemia
http://www.mail-archive.com/dokter@itb.ac.id/msg04391.html  <-- this article is old but there is a doctor's name being mentioned and maybe you can try finding some information about this particular doctor (at the time the message was posted, he was stationed at Fakultas Kedokteran Universitas Indonesia, FKUI).

If you would like to talk to me in Bahasa Indonesia, I could also do that.. and you could PM me or I can PM you or if you have msn messenger, I could chat with you online and I can give you my email address in the PM.

Well anyway, very best of luck and looking forward to hearing from you soon!!
Take care,

Dian


*

Offline KHALIFA

  • ****
  • 340
  • Gender: Male
  • ONE FOR ALL AND ALL FOR ONE
Re: Just joined in ...
« Reply #10 on: September 22, 2006, 02:07:43 AM »
welcosk and you will find the answer within me to our site between your brothers and sisters .ask and you will find the answer withen 5 minute
                                           khjalifa
RED_PILOT

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Andy
« Reply #11 on: November 17, 2006, 02:02:59 AM »
I just joined today.  I have an 8 year old with thalassemia - transfused since 3months and chelated since 18 months - iron has always been between 900 - 1600.  He is healthy and active.  Only problem has been recent development of antibodies and autoantibody increasing need for transfusion - but dr is planning to use steriod to control this problem.  I have read of all of the early deaths on this site.  It breaks my heart for the friends and families of those that were lost.  I have been hearing the outlook for thal patients is good, good management yielding a long healthy life, and possibility of a cure through gene therapy or improved BMT.  Why then are so many people dying young?  I also did not know my son was at risk while having his teeth cleaned!  I did not know dental infections were so dangerous for thalassemiacs.  Sorry such a long post..

pss i have been reading all of the posts - hello to everyone and I wish you all good health - a special hello to the mom of the little girl - she is soo cute!
Sharmin

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Just joined in ...
« Reply #12 on: November 17, 2006, 08:05:09 AM »
Hi Sharmin,

Welcome to our group. I think you'll enjoy the discussions.

The autoantibody problem definitely needs corrective actions and steroids are the normal treatment. The major concern is autoimmune hemolytic anemia (AIHA) and that is the reason why the transfusion frequency increases. The red blood cells (RBC) that are affected by the autoantibodies are rendered useless and then destroyed by the spleen. Contributing factors to this include problems getting close matches for transfusion and use of  blood not filtered for leukocytes, but the causes are not fully understood. This shows a great need for better matching which often just isn't possible with the available blood supply. This is seen as a growing problem in the US with Asians comprising a large part of the affected population. Because most of the donors are white and so many of the recipients are Asians, it has increased the matching difficulty, leading to more cases of autoimmune problems.

Some methods that are being used to reduce this are discussed at

 http://www.bloodjournal.org/cgi/content/full/96/10/3369

Quote
For prevention of alloimmunization, our results demonstrate that transfusion of blood matched for Rh and K antigens resulted in a significant difference in the alloimmunization rate...However, the parallel change to all leukodepleted blood could have also contributed to the decrease in alloimmunization. Although RBC matching was shown to be effective in preventing alloimmunization in the present study and in other studies,13,15,16 the expense and the feasibility of antigen-matched blood may not permit such a transfusion approach in some medical centers. Providing matched units for the ABO-D and Kell systems only, particularly in the Asian patients in whom anti-K antibodies were the most frequently detected (30%), is another, possibly more economic, approach. Transfusing matched blood only for patients who first proved to be "antibody producers" may reduce expenses and increase the availability of matched blood; however, patients may still develop clinically significant alloantibodies.

I have talked to many Maldivian thals who experience excess hemolytic anemia and have to transfuse weekly and still can only maintain a hemoglobin of 8. A main cause there seems to be a lack of leukocyte filters which also results in fevers being the norm after a transfusion.

Quite frankly, the deck is stacked against thalassemics and this is why even with better treatments we still have far too many thals dying young. This discussion touches on one reason. Frequent transfusions means a need for disciplined chelation and with desferal, that isn't always easy. The main cause of thal deaths is still related to iron overload and hopefully with the advent of oral chelators, this can be greatly reduced. However, we see so many other cases where other factors came into play, such as the infection from dental work. Some of these can be prevented with better education and hopefully we can help do some of that ourselves. One thing patients need to do is educate their health care providers about thal because so many have only a basic knowledge at best. Don't be shy about asking a doctor to look at something you found online. There are many great online resources for explaining and understanding the multitude of thal related problems, from the very basic to the highly technical articles. Most of what I know about thal has come from online research. The information is out there and doctors may have to be led to it so they can better understand what is going on and how to treat it. We have to do as much as we can to spread the word about thal. It is a far more serious problem than most people are aware of and the problem has the potential to get much worse with current migration patterns that have many carriers moving to western countries where it isn't common and most doctors never have had to deal with it in the past.

What is being done to reduce thal deaths? Centers like the thal center at Oakland Children's Hospital have developed comprehensive care programs for thals that involve all the health care providers working together with each other and the patients and families. This leads to better coordinated care, based on the specific patient's needs.  This concept needs to spread throughout the world to all centers offering thal care. Once again, referring a doctor to these concepts may hopefully result in a doctor at least taking a look at how thal care is handled elsewhere.

I've lost some friends and friends of friends who were thals this year and it does break my heart too. Better treatment is needed worldwide and beyond that, thals everywhere have to be presented a life worth living if we expect them to comply with treatment.
« Last Edit: November 17, 2006, 08:08:30 AM by Andy »
Andy

All we are saying is give thals a chance.

*

Kathy11

Re: Just joined in ...
« Reply #13 on: November 17, 2006, 08:34:19 AM »
Welcome Sharmin :wave :wave :wave :wave
Kathy

*

Offline Sharmin

  • *****
  • 4155
  • Gender: Female
  • Little A
Re: Just joined in ...
« Reply #14 on: December 05, 2006, 03:49:31 AM »
Thanks for the information Andy.  My son's treatment has been going so well until now and this recent development has really scared me.  I hope that this antibody problem can be resolved.  The steroid seems to be working for now, his hemoglobin has remained high and he has not needed a transfusion for the past 3 weeks.  I hope he can return to his 4 week intervals.  He is such a healthy active little boy, I hope that this issue gets resolved soon.  His doctor is hopeful that the steroids will take care of the problem.  We have been careful with his treatment, he attends all of his appointments, is transfused regularily and we have never missed a night of desferal.  I hope to see him live a long and healthy life. 

Thanks Kathy and everyone for the warm welcomes and messages of encouragement.  You all are a great group, the support everyone provides for each other is unbelievable.  Nice to meet you all!
Sharmin

 

SMF spam blocked by CleanTalk