Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: Bostonian_04 on August 10, 2016, 12:28:14 AM
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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....
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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 :)
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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?
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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.
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Thanks.
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http://www.thalassemia.org/slides-from-2016-patient-family-conference/
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Slides from 2016 Patient-Family Conference
http://www.thalassemia.org/boduw/wp-content/uploads/2016/08/Highlights-From-Cooleys-Anemia-Symposium.pdf
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MRI in Thalassemia
http://www.thalassemia.org/boduw/wp-content/uploads/2016/08/MRI-in-Thalassemia.pdf