marientina: International Thalassemia Day

Today is International Thalassemia Day, 8th of May 2007. This day is dedicated to Thalassemia, to raise public awareness for prevention of Thalassemia and to highlight the importance of Clinical Care for Thalassemia patients in all countries. This day is also dedicated to Thalassemia patients who are not with us anymore and to those who continue to struggle for survival, many whom have limited access to healthcare. As some of you already know, I suffer from the more benign form of Thalassemia. I do not require transfusions so long as I take good care of my self, but my hemoglobin remains lower than normal. Those who have inherited one thalassemia gene from each parent require lifelong blood transfusions, some as often as once per week and daily iron chelation treatment to prevent death from organ damage.

Thalassemia is a genetically inherited blood disorder that affects millions of people around the world, East to West and North to South. It is NOT anymore a disorder that only affects Greeks, Italians and Jews. India, Pakistan and Iran have the largest population of transfusion-dependent thalassemia patients and public health organizations are warning that it will become the disease of the century because it is just as devastating as AIDS. To give you an example, Pakistan alone has 250,000 patients that require a lifetime of transfusions.

Many myths about thalassemia prevent awareness, treatment and quality of life. Carriers of the gene such as myself hold the key to prevention of dual carrier births. If you suspect you may have the gene, ask to be screened and find out more about what you can do to help yourself and future generations. If you are a non-carrier and you are healthy, please donate blood this week. California is the capital of Thalassemia in the United States due to the large concentration of Asians and other ethnic populations with gene prevalence.

Spread the word!

Comments

Hi.

I was googling Thalassemia Minor information and I came across your site. I was curious about something - I know it's probably easier to ask a doctor - but I thought maybe you may know the answer.

I dont know if it is a dumb question, but- can carriers of thalassemia give blood?

Posted by: squishsquash | November 5, 2006 3:01 AM

Carriers can give blood if they meet the minimum hemoglobin requirements in their region. That minimum can be from 11-14 gm/gl because it varies by altitude, gender and age.

Some carriers are completely asymptomatic and they meet the minimum requirements. Nobody in my family has ever met the minimum, but I know others who have and have given blood. The problem is of course that if you are at minimum and give a pint of blood away you will be anemic for a few weeks or months...

The urban myth when I was growing up is that thal carrier blood will not be accepted but that is not true.

In fact some thal carriers, (dubbed 'silent') who are exceptionally healthy, won't even show any clinical manifestations of thal in blood tests, including hemoglobin electrophoresis. Herein lies the danger of having it and not knowing it...

You can join us at thalforum.com if you have more questions.

Posted by: marientina | November 5, 2006 12:29 PM

It's been a few months since I've been bled-- is there a blood van on campus, or where would you recommend going to give blood?

Posted by: Max | May 8, 2007 10:52 AM

Marientina you can....no, MUST have my blood.
Today = hug a greek day:(

Posted by: jb | May 8, 2007 5:03 PM

you can find a blood drive nearby here:
https://www.givelife.org/index_flash.cfm?thisHB=05/08/2007%2023:32:49

Posted by: marientina | May 8, 2007 11:31 PM

jb, uhm. yes. thanks. must have, huh? is it good blood??

Posted by: marientina | May 8, 2007 11:33 PM