Message from Professor Gambari to all thalpals

Hi

As you know i have met Professor Gambari who works on the Fetal Hb inducers and he is working on many inducers including Resveratrol, Mithramycin, Angelicin, Bergamot oil, and he is interested in testing any other inducers (carao, aloe vera, nigella, mangosteen.........)

Prof. Gambari knows about our site and he is asking anybody here whether (major or interemdia) who is taking resveratrol or any other HB inducers to tell him what is your observation about this inducer as this would be a great help to him in his work.

If you like you can send me your comments and i will forward them to him or you can contact him directly.

One more thing he asks to everyone using a HB inducer is to

....Please suggest people taking these compounds to ask doctors for analysis of HbF during the treatment. This is a crucial point for understanding the effects of the treatments

He means by this is that before starting you should do an HPLC or Hb electophoreseis to indicate whether there is any change in the HB F before and after using the HB inducer.


If you have any question let me know

manal

Hi Manal,

If he considers carao or nigella as a fetal hb inducer then you know my daughter is taking both of them,and we saw a week's increase in her transfusions after starting carao,infact this time i have taken her appointment for 4 and a half weeks.Lets hope we can extend to 5 weeks .

Zaini.

That is great Zaini and i too hope it will extend to more and more.

 I will definetly inform him and i also have sent him all the information about carao and gave him the contacts of Lloyd Standish so maybe they can get to work togather

manal

Andy,

1- Can a thal patient who is regular transfusion dependent undergo HPLC ?? Or it won't be relevant since it will be the donor blood??  Can it be done right before transfusion so we can test the patient own fetal Hb in order to decide whether inducers have any effect or not???

2- Is it possible to switch gamma genes in patients who have high HB (regularly transfusing)? Is living with close to normal HB a reason why fetal HB inducers don't work with majors???

manal

Helloooooooooo, anybody there?

manal

Manal Sis ,
its weekend sis , thats why nobody at home , nobody is here ...hahah hahah hahaha ...... i think now everybody should have to adopt my way of getting replies , like i did for Blueberry's thread , yeah feedback like story and point the thread how important feedback is .... hahhahhaha lolzzz Sis ...

Best Regards hope that this thread will get reply, very soon ,

Umair

Manal,

To answer your questions.

1) The donor blood will have little if any fetal hemoglobin in it, so it will not affect the test results. Most people have close to zero HbF.
2) Transfusions suppress the bone marrow so the activity is lower (close to normal). This would make it hard to get much effect from taking fetal hemoglobin inducers. There will still be a minor effect but not enough to make much difference. This is one reason hydroxyurea has seldom been tested on majors in developed countries. It would require cessation of transfusions for several months to make the bone marrow active enough to get the maximum effect from the hydroxy.  Most well cared for patients are not willing to go through this drop in Hb to try hydroxy. This is also why the main research into hydroxy use in majors has taken place in countries where care is already lacking (ie. Algeria), and why hydroxyurea has been suggested as a possible therapy for majors in these countries.

Thanks Umair 

Thanks Andy, it is more clear now and makes alot of sense

manal