Iron chelation: good and bad news

Since Exjade, iron chelation has become a more bearable and fruitful exercise. It is definitely where technology has exponentially increased “Quality of Life” for Thalassemia patients.

Today, I have an important update. Let’s start with the bad news: Exjade has caused a near-record number of fatalities in the past year. The FDA has already put out a very important detailed boxed warning which carries necessary instructions for early diagnosis of the dangers. Novartis, the creators of Exjade, have also posted a valuable guide with further instructions on managing these adverse affects.

My “day of shock”

We had known for some time of our genetic Thalassemia traits. My wife especially took care of our family’s medical matters.

We had come across the name “Thalassemia” when one sharp (female) doctor at  Dubai’s Al-Wasl hospital came down hard on using Iron supplements other doctors prescribed for my child’s Anemia before testing for his bloods’s Iron content. When tests showed Iron levels as “more than sufficient” she went on to the next stage of testing to rule out all possibilities but a genetic malfunction. Brilliant investigative doctor she was. Not assuming anything but the worst-case scenarios until the truth was uncovered. She was the first to tell us, but it never really seemed to matter. We leisurely had 5 more children since then … before being hit with our predicament !

What you need to know about doctors !

I could go on and on about doctors. Good ones and  – mostly – bad ones. But if you find a compassionate one -no matter how naive – you’ve been blessed.

Not to say that they aren’t an enormous help in dealing with day-to-day and practical miseries to be faced. But many may not have a detailed idea of what your child’s ailment entails, or are not updated with the latest knowledge on diagnosing and caring for the condition, or lack in their knowledge of what curative options have lately been made available.

Though the dreariest are the ones who have been careless in spilling out the worst scenarios of their arrogance and ignorance onto a parent’s poor, sickly depressed soul.      

Take an example or two; one doctor got into a fit and started telling a parent that “your child only has a few years to live anyway, why are you worrying so much and making a fuss about everything !” I can’t imagine how that parent lived throughout the rest of that day or how he will view doctors for the rest of his life.

Have Hope !

If you were recently told by your child’s doctor that your child has Thalassemia, the first thing you should know is that your child is in NO direct danger and that there IS a way for your child to live a normal life like other children.

You should also know that your efforts and educated decisions are the main tools for achieving the above goal. And as a parent, I expect you will want to sacrifice a little in order to achieve a lot for your child’s happiness.

In view of this, your first steps should be the following:

1. Cherish and enjoy every day of your child’s life. Give and show your child your unconditional love EVERY single day, with unrelenting kisses, hugs, kind words, and beautiful songs.
2. Start learning about Thalassemia, the available strategies and different schools of thought on dealing with treatment options for Thalassemia, and start making decisions – preferably, your own – which you will either continue with or start learning something from and change later on.