Thalassemia Patients and Friends

Discussion Forums => Thalassemia Minor => Topic started by: ETACM on April 01, 2012, 05:27:09 AM

Title: Thalassemia Survey
Post by: ETACM on April 01, 2012, 05:27:09 AM: I'm collecting a survey to try and correlate data between thalassemia and the commonly reported and ignored symptoms. If you know anyone with thalassemia, symptomatic or not, please have them take my survey. Hopefully we can use this to make a difference in the common thought on thalassemia!

Feel free to add comments!

http://www.surveymonkey.com/s/YGN5JCJ

I'll post results when I have enough data!
Title: Re: Thalassemia Survey
Post by: Andy Battaglia on April 01, 2012, 02:25:54 PM: Do I have your permission to re-post this in our Facebook thalpal group?
Title: Re: Thalassemia Survey
Post by: ETACM on April 01, 2012, 03:07:56 PM: Absolutely! Please do! The more the better! Actually I'm even looking for people without Thal to take the survey too, so I have a base comparison, so really post it wherever you can!

Thank you so much!
Title: Re: Thalassemia Survey
Post by: gwftan on April 01, 2012, 03:48:57 PM: Hi...

I've just been browsing your survey. I think you have only 2 categories for thals. You have forgot to mention those with Intermedia/HbH because I have nowhere to fill in... although I have thal.

Thanks.
Title: Re: Thalassemia Survey
Post by: ETACM on April 01, 2012, 03:54:58 PM: You are right! There, I've fixed it. Any more questions, please ask! :)
Title: Re: Thalassemia Survey
Post by: bolu on April 27, 2012, 01:15:17 PM: According to Wiki, alpha thal minor and beta thal minor have different symptoms. It seems beta thal. minor is more complicated.

May I suggest, when you collecting the symptoms of thal, ask the partakers to tell what kind of thal. minor they have, alpha or beta? Genes deletion or mutation?

So the symptoms are comparable in each group of patients.
Title: Re: Thalassemia Survey
Post by: Pratik on April 27, 2012, 01:29:46 PM: Dear,

I have answered your quiz.

Regards,

Pratik.