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31
Thalassemia Minor / Re: Thal Minor Competitive Young Swimmer
« Last post by VB on July 03, 2023, 04:25:38 AM »
hi Sofie,

Excellent post. Could you advise how you and your daughter are doing on these supplements ? specially wheatgrass, spirulina and chlorella ? thanks.

Thank you Bluebird and Andy,

Great advice.
Already after two to three weeks of taking in the advice in this forum and supplementing good nutritional food with vitamins and wheatgrass, both my daughter and I feel much much better.

I will work with the coaches and make sure that her training regime takes into account recovery times and plan out training and competition sessions.

At this stage we have not told our daughter that she is Thal minor. She is only 8.5 yo and we feel that she is too young to fully understand the significance of it all. Not sure when it would be the right time to bring her into the picture. There is also the thought that if she thinks that she is somewhat disadvantaged compared to other children, it may have a negative psychological effect. I guess this may be a good subject matter to have a separate forum discussion. "At what age do you inform your child in competitive sport that he or she is Thal minor and what it’s all about?"

Cheers and many thanks once again – Sofie
 
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courtesy : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5979411/
Quote
Abstract
Multimodal treatment concepts including liver transplantation for hepatocellular carcinoma (HCC), extended resection methods and neoadjuvant chemotherapy for colorectal liver metastasis significantly improve patients’ outcome. However, surgery-induced hepatic ischemia-reperfusion injury (IRI) and chemotherapy-associated hepatotoxicity result in hepatocellular damage and compromised liver function. Activation of common key pathways in ischemic liver and hepatotoxic injury results in oxidative stress, inflammatory responses and apoptosis causing organ damage. Controlling liver damage before and during surgery is essential for the postoperative outcome. Nigella sativa has a long tradition as a natural remedy. In the essential oil, Thymoquinone (TQ) was identified as the main component and responsible for most of the therapeutic effects. Therefore, this systematic review aimed to summarize the hepatoprotective effects of TQ and its potential suitability to improve surgical outcome by reducing surgical ischemic injury and hepatotoxicity of neoadjuvant chemotherapy. The key findings can be summarized as TQ having strong antioxidant, anti-inflammatory, antifibrotic, anti-/proapoptotic and anticarcinogenic effects. Almost no side effects were reported irrespective of a large dose range, suggesting a wide therapeutic window. These results give rise to the expectation that TQ could evolve to a novel powerful drug to reduce hepatic injury.

Keywords: Nigella sativa, Thymoquinone, natural remedy, liver, ischemia/reperfusion injury, hepatotoxicity, chemotherapy, hepatic injury
33
Working Towards a Cure / mitapivat reduces hemolysis
« Last post by ironjustice on June 11, 2023, 12:56:29 AM »
"The pyruvate kinase activator mitapivat reduces hemolysis and improves anemia in a β-thalassemia mouse model"
https://www.jci.org/articles/view/144206
34
Thalassemia Major / High Heart Rate
« Last post by whiterose on June 01, 2023, 09:16:42 AM »
Hi,
I hope everyone is doing good.
I'm Beta thalassemia, on regular blood transfusion. Mother of 6yr child. Working professional. moderate activity level, Tired. Gallbladder removed.

I have been feeling very high palpitations. Heart rate is always above 90. Sometimes it crosses 120-130 range.
Is it a bad thing, i mean i dont know the reasons of this.  Requesting some suggestions. 

All thals friends have these issues ? What's your heart rate during normal times & pre-post transfusion ?

Thanks
35
Thalassemia Minor / Alpha Minor and Oxidative Drugs/
« Last post by himynameishuman on May 23, 2023, 04:50:51 PM »
Apologies if this has been answered already. Do Alpha minors need to be concerned with consuming oxidative drugs or food? Will it cause hemolysis?
36
any new updates ? Please share the information about gene therapy in India also.
37
Working Towards a Cure / Re: Gene Therapy Receives Approval in Europe.
« Last post by whiterose on May 16, 2023, 04:33:07 AM »
Hello Everyone,

Is there any new update regarding Gene therapy in Asian markets ? Cost ?

Thanks
38
Hello everyone. My name is Ricardo and my son Gabriel has Thalassemia Intermedia. We live in Brazil. Gabriel's 17 years old and will finish High School this year. He wants togo to Australia next year for one year undergraduate student program. We are looking for health insurance plan that covers pre existing conditions in order to he can continue his treatment there, but we are facing difficulties to find such coverage. Has anyone faced the same problem? Any suggestion? Thank you so much.
39
Thalassemia Major / Re: Luspatercept ??
« Last post by whiterose on May 15, 2023, 06:57:20 AM »
Hello Everyone,

I think ROJUZDA is being used in Indian community . Requesting some reviews whoever is using it. What are the side effects, transfusion frequency after injections, cost ,availability , precautions ?

Thanks
40
Thank you for this post and sharing your research.

One question on IRON. You mentioned iron levels should be monitored. Is that true for Thal Minor also or for Thal Majors ? Do Thal Minor need to be careful about iron-containing foods ?
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