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71
Working Towards a Cure / Re: US FDA Approves ZYNTEGLO® (betibeglogene autotemcel)
« Last post by Andy Battaglia on January 07, 2023, 07:54:06 PM »
I would also like to hear from anyone who has experience, either personal or with a child who has undergone gene therapy and what the results are. With the cost of this therapy, one must be certain a cure will be had by the introduction of gene therapy.
72
Announcements / Re: My absence
« Last post by Andy Battaglia on January 07, 2023, 07:47:44 PM »
Yes, I have the book and have shown the website to my wife. She does do many of the things suggested and it may be why she is still alive at the present.
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Thalassemia Minor / Re: Is lots of manual labor detrimental?
« Last post by Andy Battaglia on January 07, 2023, 07:46:07 PM »
Hi WayfinderAli,
Can I ask how much folate you take daily? I have a very underactive thyroid and even with the thyroxine to replace the missing hormones, I still get very fatigued by the middle of the afternoon, unless I take a large dose of L-methylfolate daily. I forgot to take some of my supplements one day recently and without the folate, I was done by 4 pm that day. I take a large dose of 8000 mcg daily. It cannot be folic acid at this dose, as that large a dose of folci acid can't be processed by the liver.
74
Working Towards a Cure / Etavopivat/ FT-4202
« Last post by hopefulmommy on January 03, 2023, 09:43:59 PM »
Hello,
Doctors here at Oakland Children's Hospital are wanting to enroll child for Etavopivat clinical trials to increase Hg by 1.5 points, hence increasing the gap between transfusions.

It's  a clinical trial, more trips to hospital, and more MRI scans needed, so thinking about it.

Does anyone have any experience with it or inputs?

Thanks
75
Ferriscan® / Re: MRI hesitation..why do it??
« Last post by hopefulmommy on January 03, 2023, 09:39:20 PM »
Happy New Year to everyone!

This is a very important issue.
Doctors  want a MRI -heart , liver every 1-2 years. How necessary is that?
My child's ferritin hovers between 600-1000, on Jadenu; she is 14 years.

I am not very happy about her doing MRI every year.
76
Thalassemia Minor / Help with my test and symptoms please!
« Last post by Thalminorguy on December 31, 2022, 07:42:29 PM »
Happy New Year all,

I'm starting to have more symptoms as a Thal Minor in the last 3 years. I am 40 years old, 5' 11' and weight 200lbs. I go to the gym twice a week and walk 30min on average daily. In the past 3 years I am noticing symproms I have never had, some of them could be related to my condition and some could be the result of aging. I was wondering if anyone else is experiencing the following symptoms below.

1. Extreme Fatigue
3. Severe Dry eyes specially at night (Dr. Says it's MGD and Belaphritis)
4. Pain in ribs and joints
5. Having a hard time losing belly fat.

Blood test resutls:
White blood cell count: 7.3
Red Blood cell count: 6.6
Hemoglobin: 12.5
Hematocrit: 39.6
MCV: 60
MCH: 18.9
MCHC: 31.6
RDW: 18.4
Platelet: 253

Vitamin B12: 350 pg/ml
Vitamin D: 30 ng/ml

Any help would be greatly appreciated.

Daily Vitamins I take:
D 1000 iu
Folate 1000 MCG
Zinc 50 MG

Questions: Can I take methyfolate 15mg daily along with folate?

Should I take B12 vitamin daily or change my diet and get it through food

Should I start getting L-Arginine daily?

I have passed 2 kidney stones in the past year. I think because I was taking creatine and whey protein and eating kale and spinach. Would I develop a kidney stone if I take more vitamins daily?

Thank you so much!

77
Announcements / Re: My absence
« Last post by TonyF on December 08, 2022, 12:09:35 AM »
Sorry to hear that, all the best for her recovery!
78
Thalassemia Minor / Re: Is lots of manual labor detrimental?
« Last post by TonyF on December 08, 2022, 12:01:19 AM »
20 pullups is amazing!
Your diet sounds good.

I hate aerobic exercise too vs strength training or activities where i can stop to recoup.
Would love to see a study on how many athletes have Thal, there are a few.
79
Thalassemia Minor / Re: Help with test results please
« Last post by TonyF on December 07, 2022, 11:50:56 PM »
Interesting! I'd never heard of different types of HB!

https://www.biron.com/en/glossary/hb-a-hb-a2-hb-a1/

Andy - is there any use in getting the different types measured? I suspect a regular doc wont see the value in checking it.


80
Diet, Nutrition and Supplements / Re: Tired
« Last post by TonyF on December 07, 2022, 11:45:08 PM »
What time do you go to bed? Thats an important factor, lots of factors though. I usually feel better if i sleep before 2230.
Lots of carbs can make you sleepy too.
If you can nap though great.
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