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.

On the good side, Ferrokin BioSciences are introducing a competing oral chelator – if all tests are passed successfully – for now known as “FBS0701”.

On another note, good news also comes from HemaQuest which has cut strides towards a transfusion-substitute in the form of an oral medication (currently named “HQK-1001”). The main goal of this medication is “induction of fetal globin and stimulation of red blood cell production” so that no transfusion is further required. This will override any dangers from transfusion, either for the lifetime of a Thalassemia patient or at least until a suitable cure is found if a Bone-Marrow Transplant is not feasible.

Thanks to all the site friends who provided these updates, and please feel free to comment and maybe add your own information.

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 !

My sixth child “Omar” was born in April 2004. He was 3 months old when I had to leave my family for an extended period of time. His mother contacted me less than a month later to tell me our child was diagnosed with Thalassemia. The world spinned around me. Being away from my child at the time heightened my feelings the more. It made things even worse that I would not see my child or family until December of that year.

My wife was always suspectful with each child, and with Omar’s birth she was even more in fear. She could see something very wrong with the child that others around her dismissed ordinarily. His skin was paler by the day. Lips and flesh seemed to constantly dry up, not from the outside, but as if they were withering from the inside. Everyone around her dismissed it as normal for a baby of that early age to go through such changes. But as she saw no positive progress, only a decline, she consulted a doctor in Bahrain’s governmental “Salmaniya Medical Center”. She picked carefully, for he was not only a pediatrician but also a hematologist (an expert in blood-related issues). The doctor confirmed her fears and it was one of her worst nights. It did not make it any easier to have to tell me such news through her tears while I was away, nor to see my shock and breakdown at hearing it.

Our initial ideas and views of our child’s future were:

• Our child will have a life-threatening disease for as long as he lives, as no cure is (or will be) available for genetic diseases.
• His health will deteriorate to the point his face and body will become completely deformed as each day passes.
• His life span will only be for a few years of utter and intolerable physical and psychological agony for both him and ourselves as parents.

Because time has shown myself and my wife that none of the above is necessarily true, the story does have a happy ending.

But it’s in telling the story that we need to emphasize: some have unfortunately had that sad ending. Our prayers go to them, and our support to their families and loved ones.

That “sad ending” is what we aim to help others avoid, for themselves and their children, through our account of what happened to us since that very first “day of shock”.

Until then … be safe, have hope.

What’s your story ? And as a parent, what was your “day of shock” like ?

Tell us – and the world – with a comment by clicking the “Add a comment” link below.

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.

Another doctor, after just telling the parents that  their newborn was Thalassemic and needed blood transfusion, felt that the parents were hesitant and confused. So the doctor – taking matters in his own hand – took the parents up to the ward where the children were hooked up to blood bottles for transfusion to show them “how everyone was doing it” to the shock and depression of both parents who were just now learning how to pronounce T-H-A-L-A-S-S-E-M-E-I-A.

It’s a matter of compassion. Can’t they understand that ? We need doctors we can trust to be compassionate with our children and treat them as humans who’s well-being also depends on love and respect, and not physical fitness alone.

Good doctors …

… have a clear strategy as to how they aim to treat a patient, weighing in the pros and cons of each option available to them in view of the patient’s condition.

… treat parents as CARE-GIVERS supporting them with education on what they need to know to better take care of their child, as well as enlightening them on what the doctor’s specific strategy is and why the doctor aims to take those options rather than others.

… have medical sources regularly update them on treatment options. They – in turn – update parents and other care-givers, giving them hope for the future of their loved ones.

… compassionately care how they approach each situation with a patient or care-giver, in order not to cause unnecessary stress that would negatively affect their well-being.

How have your experiences been with your doctors ?

How did you handle and cope with critical situations ?

Tell us with a comment by clicking the “Add a comment” link below.

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.
3. Keep abreast of changes and updates on the Thalassemia scene to both treatments and cures (yes, we believe there is a way). I aim to help through this blog and the links and materials provided on it.
4. Now love your child the more … they’ve just made a fighter out of you !

Allow me to extend my warmest support and most sincere prayers to you and your loved ones on the journey that lies ahead of you. May you make the most of it, and become your best from it.

Let’s start …