Discussion Forums > Working Towards a Cure
Natural "Cures" for Thalassemia
Canadian_Family:
If it is completely natural then there is no harm in trying it. However, I would seek advice from the doctor if mixing it with wheatgrass is okay.
Interesting to see how sodium ferrulate works. Do update us accordingly.
Andy Battaglia:
Hi Carrie,
Yes, presence of an alpha deletion does moderate beta thalassemia and can lead to an intermediate status rather than major. I will be very interested to hear how the medicine works. It is proven safe and effective for o0ther conditions and is a powerful antioxidant, which would have value in thalassemia.
http://www.ncbi.nlm.nih.gov/pubmed/16007232
--- Quote ---Cardiovasc Drug Rev. 2005 Summer;23(2):161-72.
Pharmacological actions of sodium ferulate in cardiovascular system.
Wang BH1, Ou-Yang JP.
Author information
Abstract
Sodium ferulate (SF) or 3-methoxy-4-hydroxy-cinamate sodium is an active principle from Angelica sinensis, Cimicifuga heracleifolia, Lignsticum chuangxiong, and other plants. It has been used in traditional Chinese medicine and is approved by State Drugs Administration of China as a drug for treatment of cardiovascular and cerebrovascular diseases. SF has antithrombotic, platelet aggregation inhibitory and antioxidant activities in animals and humans. For several decades SF has been widely used in China to treat cardiovascular and cerebrovascular diseases and to prevent thrombosis. Exciting clinical results have been obtained with SF in coronary heart disease, atherosclerosis, pulmonary heart disease and thrombosis. Its safety and efficacy have been demonstrated in clinical practice. This article briefly reviews basic pharmacology, pharmacokinetics, toxicology and clinical pharmacology of SF. The in vitro and in vivo data support the view that SF is a useful drug for the treatment of cardiovascular diseases.
PMID: 16007232 [PubMed - indexed for MEDLINE]
--- End quote ---
mommycarrie:
The doctor explained that sodium ferulate strengthens the cell wall of RBCs to prevent hemolysis. Sounds like it acts similarly to folic acid.
I learned today that it is hard to find sodium ferulate here. We have to order online to get a bulk. It is VERY cheap but hard to find. The only studies I found about it is its use as anti-thrombotic.
I found one study about its effects on protecting heart injury against iron overload http://en.cnki.com.cn/Article_en/CJFDTOTAL-JXYB201209006.htm
However, this was done on mice.
I've seen forums about the Yisui Shengxue Granule as an HbF inducer. I asked my officemate to translate this to me in pinyin so I can ask our hematologist about it and to check out the pharmacies.
I also found this table of Natural Cures for Beta Thalassemia http://www.hindawi.com/journals/isrn/2014/123257/tab2/
I plan to translate each in pinyin and ask hematologist for the safety of these products for children.
Andy Battaglia:
Carrie,
We have heard about Yisui Shengxue Granules for years but have yet to talk to anyone who has tried it, so if you are able to find it, I would like to know if it does have positive effects.
mommycarrie:
Update on my son's sodium ferulate treatment:
We went back home in the Philippines for the Christmas vacation. My son's appointment with his hematologist here in the Philippines is scheduled on the 20th so we got his blood tests on the 19th, this was his 27th day on sodium ferulate. His last CBC was done Nov 23 and his hemoglobin is at 83. He is now at 100. His hematologist in China told us that sodium ferulate can prolong the lifespan of his RBCs enough to give his bone marrow time to make new ones but of course sodium ferulate is not a cure.
I'm happy with the outcome. The only prob is there is only ONE distributor/manufacturer in China. Hopefully, the company will NEVER stop manufacturing the drug.
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