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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54763 Posts in 5806 Topics by 6042 Members
Latest Member: Rakesh Das

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 1 
 on: September 18, 2018, 12:33:59 AM 
Started by Sunny2701 - Last post by Than2499
Yes, I am.

My case was unsuccessful. My Hb did not improved. I knew from my doctor, just only me in all trials site around the world that Hb not improved.
Other members in my site have significantly improved since they got real medicine.


     

 2 
 on: September 18, 2018, 12:24:52 AM 
Started by Lan Anh - Last post by Than2499
Dear Gabriellavanessa, Sharmin and Andy,

Thank you very much for your valuable advices. We are now confident to make decision not to go for BMT in Taiwan.

Dear Gabriellavanessa, we also think of going to Bangkok and would be very grateful to know your experiences there. Please kindly check your inbox and advise us.

Dear Sharmin and Andy, if Thailand doctor also confirms such high mortality risk, we will not consider BMT anymore. In that case, could you please kindly introduce any doctor who has expertise in thalassemia treatment that we can consult to find the best long term solution for my son at an economical cost?

Thanks a lot once again for your great help and looking forward to hearing from you.
With best regards,
Lan Anh




Lan Anh,

Hi. I'm liveing in Bangkok and I know a lot of best Thal doctor. I can give your advice for long-term treatment. BTW, in Thaniland, we quite advance for BMT and stem-cell therapy and also now we also have stem-cell bank in order to search matched donor.
Thailand's top 3 hospitals of Hematology & Thalassemia

1. Ramathibodi Hospital (public hospital)
Most of doctors in hospital likely progressive style, they're adopt new knowledge, technique and researched therapy for their patients. Dortor Suradej Hongeng (Division of Hematology) was the member of trail Lentiglobin Gene Therapy, he was experienced in BTM & gene therapy. You can make him an appointment to consult. Rama has highest successful rate in BMT. Thay have premium department for patients who don't want to wait a long doctor appointment. I recommend Dr.Suradej Hongeng if you interesting for BMT or stem-cell. 

2. Siriraj Hospital (public hospital)
One of the biggest hospital in Thailand. They have a lot of Thal patients so they have a lot of Thalassemia knowledge base. They have a fully medical facilitates. Siriraj was the highest number of BMT in Thailand, success rate is very good. The drawback of Siriraj is a lot of crowded patients so physical examination time may short (15-20min) and you may not met the senior and experience doctor. If you need to examination with experience doctor and have premium service you can go "Siriraj Hospital Piyamaharajkarun" premium services with premium price.   

3. Chula-longkorn Hospital (public hospital)
One of the biggest hospital in Thailand. I have doctor in this hospital. In my opinion, most of doctors in Chula hospital quite conservative style. BMT and stem-cell were not so expert as two hospital above but if you need for long-term treatment this hospital is quite good due to new building (convenient as private hospital and patient not so crowned) and fully of medical facilities. Chula hospital is advantage in blood bank because the fully co-operate with National Thailand red-cross so you won't worry for rare blood typing.
   
if you need more detail, just post and i will answer you.

 3 
 on: September 17, 2018, 06:16:34 PM 
Started by Trangvn - Last post by Andy Battaglia
The changes are very slight and may not mean much, but the average size of red blood cells is slightly bigger and the red blood cell count is slightly lower. Both changes are positive but are small at this time.

The changes in the electrophoresis don't mean anything. That will be slightly different every time it's measured.

There can be changes with wheatgrass that aren't really measurable, like energy levels and an improved immune system.

 4 
 on: September 17, 2018, 06:12:20 PM 
Started by jatin - Last post by Andy Battaglia
I don't know if there's any specific relation between migraines and thalassemia, but if anyone has any tips, I would also like to know, as my wife gets them occasionally. I've been getting ocular migraines that don't have a headache but distort my vision, limiting my online time lately. Again, if anyone has ideas that are known to help, we would appreciate it.

 5 
 on: September 17, 2018, 06:08:37 PM 
Started by faridanjum - Last post by Andy Battaglia
Have you checked with Ayesha at FAITH for direction?

Call +92 332 3080461

m.me/FightAgainstThalassemia

faith@thalassemia.com.pk

http://thalassemia.com.pk

https://www.facebook.com/FightAgainstThalassemia/

 6 
 on: September 17, 2018, 06:06:13 PM 
Started by jatin - Last post by Andy Battaglia
Has there been any MRI to check for iron in the organs?

 7 
 on: September 10, 2018, 10:59:08 PM 
Started by dq - Last post by Than2499
Hi dq and Andy,

My back pain is no more since I keep 13Hb for a while. I already have MRI on spine last week and I will go to see my doctor for MRI result in this Friday.
I will update my MRI result and my friends who are ongoing Luspatercept.

I don't have problem constipation. On the other hand I have problem with upset stomach. It happen every morning or 30 min after i have a breakfast (fist meal of the day).


 8 
 on: September 10, 2018, 08:55:37 AM 
Started by Trangvn - Last post by Trangvn
Hi, elevtrophil result changed
                  5/5           10/9
hba1         27,4         26,4
hba2  not indicate      8
hbe            52,6         50,3
hbf             19,8         15,3
How should i understand this change? Thank you!

 9 
 on: September 09, 2018, 08:17:00 AM 
Started by Trangvn - Last post by Trangvn
Hi Andy
This is the change after 3 months of using wheat grass and other suplementary.
Could you help me to analyse the change:
             5/5      9/9
Hb         97       98
PLT      484     420
RBC     581    566
HCT     31,4    32,9
MCV    54.1   58
MCH    16.7  17.3
MCHC  308    297
Ferritine 99.1  63.54

Do you think she is getting any better? Thank you!
The most discourage thing is that the handy HB analyser machine did not show the correct result. When the lab result is 9.8 the handy HB machine show 12.2!!!!

 10 
 on: September 06, 2018, 08:28:16 AM 
Started by jatin - Last post by jatin
Has any one migraine headache in thalassemic major .
What care should be taken pls suggest your experience.
Thanks to all
Jatin

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