Category Archives: All About Thal…

As my family & friends know that I have thalassemia (A blood disease), so here I will post new things about Thalassemia which i find intresting or worth-sharing..

New oral drug could make Thalassemia treatment less painful for children

Courtesy by DailyTimes.Com.Pk!

* Ferriprox tablets can be used as iron chelation treatment instead of Desferal injections

By Tanveer Sher

KARACHI: Any child who has Thalassemia, a blood disorder that requires a lifetime of transfusions, will tell you that five to seven days a week they have to undergo the painful treatment of receiving injections for eight to 12 hours in order to flush out the iron buildup in their system.

According to hematologist Dr Tahir Shamsi, children with Thalassemia major need to receive blood transfusions to overcome their shortage of red blood cells, which otherwise makes them pale and tired. Most children with Thalassemia major need blood transfusions every four to six weeks for the rest of their lives but with regular transfusions, these children grow normally and are able to do all the things other children do.

But as blood contains iron, which the body cannot get rid of naturally, the multiple transfusions result in a build up of the element. After ten or more years, the presence of such levels of iron may cause complications, which can result in poor growth and development, liver and heart disease, and even death.

According to Shamsi, in order to prevent these problems, children with Thalassemia major needed regular treatment to remove the excess iron from their bodies for which Desferal (R) (deferoxamine mesylate) (Desferal (R) is a trademark of Novartis Inc.) has been administered for decades.

Iron chelation is the only effective therapy for removing excess iron. Until recently, the only chelator available was Desferal, a drug that must be injected under the skin for 8-12 hours, for 5-7 nights per week. This treatment is exceedingly painful for the young patients and many parents are reluctant to put them through the agony. Unfortunately, this puts their child’s health at risk.

But now, a tablet can replace these painful injections, Shamsi says. Ferriprox (TM) (deferiprone), (Ferriprox (TM) is a trademark of Apotex Inc.) the first iron chelator which can be given by mouth, is currently approved in 48 countries, including the European Union, for the treatment of iron overload in patients with Thalassemia major for whom deferoxamine therapy is contra-indicated or who present serious toxicity with deferoxamine therapy.

Ferriprox is approved by the American Food and Drug Agency (FDA). The new medicine is used once a day by the patient and helps remove the accumulated iron from the body through urine and stool.

So far, more than 50 children have been given the new medicine, Dr Shamsi said while referring to treatment at the Bismillah Taqi Blood Disease Center.

He said that every year more than 5,000 new cases of Thalassemia major are detected in the country and currently 55,000 patients are registered with the Pakistan Thalassemia Federation.

Hematologists have identified the marriage of two Thalassemia minor people as the major cause of the spread of the illness as their newborn in most of the cases was found to be a patient of Thalassemia major.

There are more than 10 million Thalassemia minor patients in the country and unless the government introduces a law banning the union of two Thalassemia minor people, more children are likely to be born with the disease. (Ed’s note: Kindly consult a physician or your doctor before you make any decision about the medications mentioned above.)

Good Deeds!

The world is not empty from “Naik Log” there are many people by whom the world is going on and the good deeds are going on… by them the Shoukat Khanam, Abrar-ul-Haq’s hospital and many originations are working and helping peoples.

Today when we were at Fatimid for transfusion, two ladies entered the room for Blood Donation, she asked about us, and we asked about them… during our talk we got to know that one of the ladies is Squash Player Jahangir Khan’s wife and other lady was her neighbor cum friend, Jahangir Khan’s wife wasn’t scared, but the other lady was scared of Needle, Jahangir’s wife was continuously telling her to calm down and was too much ambitious about blood donating MashaAllah, I asked her who motivated her for donating? She said “like we give “zakaat” “khairaat” I think we should also give our body’s share in “zakaat” too, so as the holy month is here so I thought why not do some good deeds? She also said “after death the blood wont be there, so when you have time why not donate it?” she told us that people don’t come forward to donate blood because of lack of awareness, she asked the Fatimid camp arranging team to gather all the information about Donating and to answer the questions that a person have about donating blood :)!, and make some book for it and distribute it all over the Karachi and all, and she also said that she can help in arranging camp in DHA and Clifton.

I think this is awesome, someone can be this much ambitious is like ‘Too Good’ for Thalassemics :)!

When you get depressed and sad because of the situation around you about blood and donations and at the same time when just a little window gives you some light that doesn’t give light but lots of HOPE! And makes you believe that Allah is there! And he won’t leave you alone 🙂 and there are people like Jahangir’s wife and many other who are ambitious and like to do something for this society.

I will end my post here with Jahangir’s wife wording she said and I liked

“Don’t think what society has given you? Just think that what you have given to society?”!

Take Cares, Allah Nigh-e-Baan
-Ayesha