Happy Birthday to my children

Today my daughter and son reached the age of 5. My daughter (A Thal Major) is 5 and I think of parents who have lost their infant children and even didn’t know what was happening to them. I think of millions of parents who see their children suffering as they cannot afford to treat the condition. Desferal is once a month luxury for them. They travel hundreds of mile every month to get their children transfused.

Cooleys Anemia / Thalassemia was described by Dr Thomas Cooley in 1925 when he observed the symptoms of paleness, bone deformation and poor growth in Italian children living in US at the time, the mortality rate of 5 at best, most died in their infancy not seeing their second or third birthday. Thalassemia thought to be prevalent since 400BC and no reference to the condition was found until 12th century which only described some symptoms thought to be close to thalassemia, it is thought that the genetic mode of thalassemia appeared sometime in that era (400BC) as a defence against world wide malaria epidemic, humans effected never recovered from the change and for centuries they still carry the genes.

Cooleys Anemia was first described by the efforts of Dr Cooley. Later, blood transfusion was recommended for the major patients in 1940s and 1950s without chelation therapy which increased the mortality into teens at best but with severe health problems. With the advent of medical technology and more knowledge of genetics, limited iron chelation was introduced in late 60s and early 70s which resulted in the mortality to twenties for some. Last 10-15 years more research, hyper blood transfusion regimen, extensive iron chelation therapy and focus on the management of thalassemia resulted in better quality of life and patients survival in their mid 30s, 40s and beyond for some.

Thalassemia is a world wide problem even today, patients living in countries with poor medical facilities face severe challenges to maintain their health. The management is extensive and very expensive and for some beyond their means. The mortality is still low for many.

I see my daughter lucky to have best care available in the world today but how can I forget the pain of others. Most of us here understand and provide the best care to our loved ones but we know there is a lot of pain for some unprivileged

Happy Birthday to my Children.

Canadian_Family --> You have rightly described the history of thalassemia. As many of us know, a lot still needs to be done for treatment and cure of thalassemia and another major piece we miss in some parts of the world is AWARENESS. Even doctor's in some countries think that a Thal Major cannot live more than their teen years... They really are like those frogs living in a well and don't know of the lives outside of that well. With the modern technologies like internet and medical advancement, I am optimistic of future of thals and I think we have come a long way from having no knowledge of thal to using desferal to having oral drugs for chelation.

Wish your childrens lot of healthy years to come and I also wish that a cure comes over and changes the lives of thousands of thals in the next decade or two.

Happy Birthday to your children. 

As I think about Chris in the UK, who will turn 50 next month and who did not grow up with the treatment we take for granted today, I can only think the prognosis for the thals of today is very bright. The one piece of advice I have heard from Chris is that each patient must make a full commitment to compliance with treatment. No excuses are accepted. Chris gets very frustrated when he hears about patients who won't chelate or follow their treatment. And I agree with him in feeling that way. On the opposite side we see parents doing every single thing they can do to help their children have normal and quality lives, like you and so many parents in this group are doing. In spite of the pain of watching your children get pricked with needles and have to faithfully comply with all facets of treatment, you do all that is required to make sure that your children can thrive. Canadian Family and all other families, I commend you for your efforts which will mean many more birthdays in the future.


(How is your daughter's hearing now that she has  switched to exjade?)

Happy Birthday to your children! 

I wish your daughter a long and healthy life! 

Love Sharmin
 

       
   Happy Birthday to Your children
 

i wish that u n ur children a " LIFE FULL OF LIFE "

Happy Birthday, i wish them all the best and all the health

manal

   

Happy birthday to your children.

Jade

Everybody, Thank you all for the good wishes.

Andy, You asked for the hearing, since she started exjade 5 months ago and not using desferal at all, the hearing and eye test all came borderline. Unfortunately, she found to be most reactive to desferal than normal. We are waiting to see another test to determine effects of exjade.

HAPPY BIRTHDAY TO YOUR LITTLE JEWELS

 

ZAINI.