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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55156 Posts in 5879 Topics by 6155 Members
Latest Member: jchang121

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
Pages: 1 2 3 4 5 6 7 8 9 10
 1 
 on: Yesterday at 06:49:16 PM 
Started by Rachel Martin - Last post by Rachel Martin
Thank you so much for responding, Andy. There's so much to answer here.

Yes, my doctor has checked my thyroid, and she always says the tests look fine. I'm not sure exactly which tests are for thyroid, but my TSH was 2.43 uIU/mL. Are there any other tests I should be looking at?

I have used a radiant heater before; that's a really good idea. I had a foot rest heater that worked really well for me. I could try to get that or find another similar thing.

I haven't started taking vitamin C yet because I'm not sure when the best time is to take it. My ferritin levels were quite high, and I've changed my diet to keep my body from absorbing large amounts of iron, including avoiding vitamin C at meals as much as possible. I also eat every few hours, so when would I be able to take the vitamin C?

I've tried various different brands when it comes to base layers, but only things on sale until I figure out what works the best. My favorite was at Cabela's, but they've stopped selling it now. I have not yet tried Under Armour, but that might be worth trying. Like I said, I currently wear polar weight, which is the warmest you can get. I have a very warm shirt I like from Paradox.

 2 
 on: November 11, 2019, 09:03:09 AM 
Started by Andy Battaglia - Last post by Emby
Yes! Thank you so much Lisa and Andy! Truly this is very much a journey where seeds were sown, the tree has grown, its branches reached high and wide and now the fragrance and sweet taste of its fruits is reaching everywhere.

 3 
 on: November 11, 2019, 08:47:15 AM 
Started by Andy Battaglia - Last post by Emby
Thank you for this great news Andy!
Please can you help me to understand how exactly it works, although you have highlighted it.
I thought the Hb weakens when blood cells mature. Sorry mind fog. Will it be in medicine form?

Thank you and sorry just can't seem to think straight at the moment.

 4 
 on: November 11, 2019, 08:16:17 AM 
Started by Andy Battaglia - Last post by anshul
Great News!!

Do we know if only Adults or Kids also can be benefited once it is available?

 5 
 on: November 10, 2019, 01:06:52 PM 
Started by Andy Battaglia - Last post by Sunny2701
Great news! First Gene therapy approval and now this. This definatly is a big step forward. Let's hope everyone is able to reap benefits of these new modes of treatments as early as possible. Although this may not get us totally off transfusions, but there is a silver lining:)

 6 
 on: November 09, 2019, 12:28:00 PM 
Started by zahra - Last post by zahra
Thank you Andy. Your guidance has assured that. Will forever be grateful for that

 7 
 on: November 08, 2019, 03:40:51 PM 
Started by Andy Battaglia - Last post by Andy Battaglia
Great news today! The new drug, REBLOZYL (Luspatercept) has been approved by the FDA today.

https://ir.celgene.com/press-releases/press-release-details/2019/FDA-Approves-REBLOZYL-luspatercept-aamt-for-the-Treatment-of-Anemia-in-Adults-With-Beta-Thalassemia-Who-Require-Regular-Red-Blood-Cell-Transfusions/default.aspx?fbclid=IwAR04eCT3kPgz4ysLirPWdIjmoFHGAWuu7omfB2hOT4ahZNct0U4r9s88lDw

Quote
REBLOZYL is the first and only FDA-approved erythroid maturation agent, representing a new class of therapy which works by regulating late-stage red blood cell maturation to help patients reduce their RBC transfusion burden.
REBLOZYL is anticipated to be available [in the US] 1 week following the FDA approval.

At this point, I do not know when it will become available outside the US, but I will try to inform once I know more.

 8 
 on: November 08, 2019, 03:34:32 PM 
Started by zahra - Last post by Andy Battaglia
Zahra, I am so happy to know that your son is doing well.

 9 
 on: November 08, 2019, 03:33:24 PM 
Started by Imranjokhio - Last post by Andy Battaglia
As long as the testing was accurate, you're in no danger of having a thal major. If there is any doubt, have your wife undergo DNA testing for thalassemia.

 10 
 on: November 08, 2019, 03:32:02 PM 
Started by Rachel Martin - Last post by Andy Battaglia
Hi Rachel,

Has your doctor checked your thyroid?

Can you use a different type of electric heater at work that does not have a blower? Something that gives off radiant heat, perhaps.

Are you taking vitamin C? It's quite useful in promoting better circulation, which can help improve circulation, which should help with coldness, especially at the extremities?

I have a very bad thyroid and I have a hard time tolerating cold, regardless of what I do. I dress warm. You might also consider wearing something like Under Armour (there are other brands that are less expensive but do the same thing) under your clothing, which is very light fabric but retains heat quite well.  My son wore it when he played high school baseball in the spring, when the temp is often in the 40's. It works quite well.

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