A few days ago I was jarred out of my ignorance by an article I read in “The News” on thalassaemia major and the amount of blood required for its patients in Karachi.Â After raising this issue on Bloggers AP, I came in touch with Salman & Ayesha who run a very detailed website on Tmajor and its effects plus are actively involved in spreading awareness for this disease as well as organizing donations for its patients. So I immediatley went into interview mode and following are their very frank answers to my queries. Hopefully this will go a little step forward in us educating our selves on this disease and then going out to actually donate blood.
1/ Why did you and salman start this effort? Tell us your story and the struggle behind it.
Our elder brother Nauman died at the age of 16, I was 12 at that time and I knew that doctors told our parents that kids with thalassemia don’t live for very long. So that incident was like confirming what the doctors said and it was very disheartning for us. Then I tried doing some personal research using some books I got from Fatimid then using internet and I realized that it’s not completely true — at that time I thought I should share the information I have found with others. And that very thought became the reason to launch a website dedicated to thalassemia.
2/ Upon visiting your website i found it to be quite extensive, could you tell us what functions it serves and how people can use it for awareness as well as organization.
It’s supposed to be simple for people to understand the disease, the problems associated with this disease but it should also make it clear that it’s not terminal if treated correctly. I don’t think it’s serves that function and I am not happy with the website.
It still offers Research Material, some articles, latest news via blog and we are also working on a donors system which will help thalassemia as well as normal people.
3/ You mentioned the blogging community not being helpful to you in the past in your effort why do you feel this is so?
Don’t get me wrong when I say this but people in general are selfish. We all want to be in places where we get exposure or fame or money, or if it’s of some personal interest. For example If you look at me, I am working on this project because I have my personal interest in this topic. So basically what I am trying to say is that this particular topic doesn’t appeal to bloggers.
4/ Tell us a bit about day to day life as a patient of the disease you and salman are so bravely fighting?
We wakeup at undefined time, after breakfast we visit the borders and we give a dead stare to our enemy “iron” and then we start chelation.
Thalassemia is troublesome sure but it’s not something you fight with. A thalassemic practically enjoys everything that the life has to offer. We have to do iron chelation daily, in past chelation was done using Injection Desferal only. So patients were stuck with a desferal pump attached to their body for around 8 to 12 hours. But even with a pump a child easily goes to school, plays with his/her friends etc. Presently use of oral tablets for iron chelation is making chelation process more comfortable and quicker.
in short, we spend our day almost like other healthy person. Working at home, Working at job, going out with friends, stalking girls, gossiping with friends, etc etc. And to keep us rolling we take some oral medicines daily and some blood smoothy after 15 to 20 days.
5/Â Some blood donor agencies are doing their level best to fight with you in this effort, tell us what is required and what more can be done?
More blood agencies! More hospitals dedicated to Thalassemia, on may 8th they were showing that there are no thalassemia related hospitals in Swat, but they have one of the highest number of thalassemia patients in swat! They need a hospital there, they need a blood bank there!
Additionally, as you might know Thalassemia is a very expensive disease, and most families can’t afford the proper treatment, these kids need your help. Hospitals like Fatimid have programmes like “Sponsor a child” where you can pay for a childs medical expenses.. you just have to pay a tiny amount (2000 RS per month?) and you will be provided with complete details of the child/children you have sponsored. You can sponsor multiple kids the more the better.
6/ I know that when two Tminor patients marry their is a big chance of their offspring being Tmajor which can be a terminal disease, still how do you propose these couple can be told not to have children as there is still a slight chance that their offspring might be normal? Are their specific tests to determine the fetuses status as per this illness?
Only 25% chance of their kid being Thalassemia Major, 50% chance of being Thalassemia minor which as you already know is not a disease, it’s just a silent carrier state. So basically they have 75% chance of not having a Thal Major child. So there is no need to tell them anything except that they must get Pre-natal tests on each pregnancy to determine that the new born kid will be thalassemia major or not.
Infact even Thalassemia major can marry a normal person, there is a high chance of getting thalassemia major kids when a thal minor marries a thal major so it’s not recommended. But Thal major can marry a normal person and have normal kids and lead a normal happy married life.
7/ There is a phobia in Pakistan about giving blood, what are your thoughts on this?
Phobia or Excuse? We like to excuse ourself from everything.:
“Hey dude you are B+, there is a shortage of O+ blood in XYZ hospital, let’s go.”
“sorry dude, i don’t trust fatimid.” OR “sorry dude, AKUH is a total rip off I can’t donate there.” and even “sorry dude, i just donated my blood to chacha ki beti ki doast ki ammi ke bhai ke larke ke doast ko”. We just excuse our way out of everything.
I think if people who have followers, fans start donating blood it will motivate their fans and followers to do the same. just like product endorsments, but maybe a bit more difficult. Maybe multi-national companies can give paid time off from work to donate blood? Got this idea from wikipedia btw. The thing is that we need to tell people that there are no DISADVANTAGES or DANGERS in donating blood. Infact there is a feel good factor in donating blood, even if there are no real health advantages of donating blood you feel very good after donating blood. You realize that you have actually helped someone and it makes you feel happy and good. Now is there anything bad in feeling happy or good? Don’t think so, so go donate blood.
8/ Do you feel you are making a difference and how?
Yeah we embarass people for a few minutes, then they realize it’s indigestion. Jokes aside we don’t think that we are making any difference, but we are trying and that is what counts, We are not just talking and discussing it on blogs twitters facebook messageboards or chat rooms over and over again we are trying to do what’s in our hand. and that is what people should be doing too. Discussing is good, Talking is good, but there comes a stage when you have to act. And we should act.
9/ What message would you like to give the nation?
Please go for a HB Electrophoresis test today. Donate blood (if you read it on Sunday 10th of May 2009 please go to fatimid and donate B+ blood if you can thanks). If you want to see how serious this disease can be then please visit any thalassemia center, Kashif Iqbal Thalassemia Care Center, OR Fatimid OR Hussaini and talk with patients there.
-Salman & Ayesha