CAF Patient-Family Conference in San Diego in July

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Offline Bostonian_04

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CAF Patient-Family Conference in San Diego in July
« on: August 10, 2016, 12:28:14 AM »
We could not attend the CAF Patient-Family Conference that happened in early July'16 in San Diego due to family issue.

 Did any of the Thalpal members attend? if so, could you please share info that you think is important or still in your mind after almost a month. TIA....
Quis custodiet ipsos custodes ? - Plato

Re: CAF Patient-Family Conference in San Diego in July
« Reply #1 on: August 21, 2016, 07:40:54 AM »
Hi it was our first time attending and I'll try my best to think of the key points. Our thal major daughter is 3 years old so the important things may differ from family to family.

Notes:
10 years post BMT;
endocrine problems 70%
cardiovascular 10-30%
hepatic 40%

BMT: 5% death risk and 87% total cure rate

for annual MRIs:

Liver iron <7mg/g
Above 15-20 dangerous
No safe level in liver iron

Heart affected by missed exjade
Not enough after liver uses it up, no protection left for heart
Missing even 10% of exjade (I.e 3 days in a month) is basically like not taking it... It will not work this way.

Low T2* means high heart iron

More than >30 Ms is good
20-30 cautious
10-20 dangerous
<10 fatal

Pancreas iron overloading happens before heart; early warning sign



These are some quick notes I made on my
Phone... Please feel free to ask any other questions -I'll try my best to remember :)

Keep your head up. God gives the hardest battles to his strongest soldiers.

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Offline BabyRiya

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Re: CAF Patient-Family Conference in San Diego in July
« Reply #2 on: August 21, 2016, 11:30:04 AM »
Can you please elaborate on endocrine and heart issues?

R u saying it happensa to Thal patients after doing bmt or irrespective of that?
Also can you elaborate on heart issues?   R u saying the issue happens if some one is irregular in taking medicine?
Did the Conf say anything about new medicine or cure in pipeline?

Re: CAF Patient-Family Conference in San Diego in July
« Reply #3 on: August 21, 2016, 09:39:43 PM »
The heart and endocrine percentages for issues was for patients that undergo BMT.

Yes the heart issues occur when people are not compliant with chelating on a daily basis.

Yes they talked about trials currently underway for the "cure"... Unfortunately I had to step out during this time to check on my child. 
Keep your head up. God gives the hardest battles to his strongest soldiers.

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Offline BabyRiya

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Re: CAF Patient-Family Conference in San Diego in July
« Reply #4 on: August 22, 2016, 01:17:36 AM »
Thanks. 


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Offline Parin

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