Prevention of Thalassemia(Major)

I have been reading a lot of Thalassemia(Minor)'s NOT knowing what does Thalassemia mean to them. In fact, when I was NOT warned by the doctor when I was diagonised that I am a Thal(Minor) - it shocked me to learn later on what could happen had my wife been a Thal(Minor). There should be a general awareness among us of what this means in our life

The best thing for all to do is know how we can prevent-

How we can Prevent Thalassemia(Major) to anyone??
First of all, once anyone detected with Thalassemia(Minor) or Thalassemia(Major) must let their siblings/parents know that there might be a possibility of them carrying the Thalassemia(Minor) gene too. So, the best thing for them would be to get their family members screened for Thalassemia. This knowledge would also help the parents who have a Thalassemia(Major) child to think before they plan for another baby as there is a 25% chance that the next baby too might be a Thal(Major) patient. (I have seen some families who have more than 1 child who is Thal(Major) and they are NOT twins - how can we be so ignorant in this age)

Remeber, Thalassemia(Minor) is NOT a disorder. It is just when 2 Thalassemia(Minor) get married that they have a chance of having a baby who might have a major blood disorder due to inheritence of the Thalassemia genes from the parents. I know that there are lot of people who do NOT want to get tested when they have no knowledge about the disease and how it occurs. But, if we try to share our knowledge of how this disorder occurs - we might be able to Prevent the birth of another child with Thalassemia(Major).

I have seen a few center's who have taken the initiative and have started screening and educating in colleges and schools for Thalassemia(Minor) who are carriers of this gene and also do genetic counselling with couples before they plan for a child if either is found to carry the Thalassemia(Minor) gene. They also screen schools before the admission of the child so that the family is aware that they have a Thal(Minor) child (That would help parents know that either of them is a Thal gene carrier and that would raise a red flag if both parents are Thal gene carrier's)

But, I would say the most important part is on us - the Thal community to spread the word and NOT let this happen to other's. If we start from our own family and tell our siblings and 2nd or 3rd cousins what this means to them and hopefully they understand - we can prevent the birth of Thalassemia(Major) childs. Like if someone is detected with THal(Major) or Thal(Minor) - they talk to their parents and their siblings to get tested. Once, they know which parent is a Thal(Minor) - they should share the knowledge with the father's side of the family or the mother's side of the family and get them the knowledge that their kids too might be carrying the Thal Carrier gene - so that they might want to be knowlegable and might have a choice of NOT marrying a Thal(Minor) if someone is already a Thal(Minor) - that way prevention of 2 Thal(Minor)'s to get married.

Views?? Comments?? Suggestions??

Hello Narendra,

Thanks for posting your thoughts!  It is an interesting discussion.  I work for the Thalassaemia Society of Victoria in Australia and   my job is to conduct presentations to increase awareness about thalassaemia.  I do a lot of presentations at schools, where learning about a real genetic condition fits in with the science syllabus.  These presentations are provided free of charge to the schools.  We also give presentations to community groups and anyone else who is interested.  I believe that it is important for people to be aware of thalassaemia and how it is inherited, so they are able to make informed decisions in their lives.

In your post you stated

(I have seen some families who have more than 1 child who is Thal(Major) and they are NOT twins - how can we be so ignorant in this age)

, and you discuss the idea of thalassaemia prevention.  The families that have more than one child with thalassaemia might literally be ignorant of the mode of inheritance; if someone does not explain to you how your child has inherited thalassaemia then it is difficult to understand you might have another child with thalassaemia.  Another point is that some religions do not allow for abortion of affected foetuses, or for the use of contraception.  In this case, there is a chance the family will have another child with thalassaemia.  However, knowing your carrier status allows you to make an informed choice in all these matters.

Now for the really tricky bit... I do not have thalassaemia major so I can't give an informed comment on this, but I believe that people who are living with thalassaemia are able to lead fulfilling lives.  That is something that I have learnt during this job, that although people with thalassaemia major have to deal with a lot of medical issues, they live pretty "normal" lives!  And whilst they would no doubt prefer not to have to deal with daily medical issues, they are able to love, to work, to do well in their careers, to laugh, to have fun, to travel, and to build meaningful relationships.  So whilst some couples may choose not to have a child with thalassaemia, there are others who might decide to continue/start a pregancy despite the status of thalassaemia.  Personal choice.  What I have written is only what I think, but it would be great if some people with thalassaemia major could actually comment on what has been said.

Cheers,
Sally.

Hi Sally,
           You are absolutely right! We should not let any disease hinder our lives wether it may be Thal., Sickel Cell or Diabetes to name a few.

           All that it requires to lead a normal healthy and happy life is a dedicated treatment and prevention, which can only be possible by mass awareness.

Sajid

Raising the awareness of Thalassaemia is a MAJOR (hahaha)  task. What gets me fired up is when I hear the words such as "eradication of Thalassaemia" and "disease" In our  society we think of a disease as something we can catch but thalassaemia is a "condition" that we are born with and live with.

The general public needs to appreciate that some people may choose to have a child with thalassaemia major rather than terminate. We need to support and understand these decisions instead of blaming them for their choice. In the cases such as our older generation the parents didn't have a choice in their final outcome, hence our generation needs to raise the awareness. Parents of thalassaemia major patients already carry some guilt - we need to take that guilt away and tell them not to feel guilty about creating something with love.

Having thalassaemia major isn't such a bad thing. I think many forget that there is worse out there. We should be greatful that we are able to appreciate the finer things in life such as the colour of the sky, watching the cloulds drift by, feeling the rain on our face, touching the grass and the list goes on.

My personal experience with thalassaemia has not restricted me at all. Yes I have faced many chanallenges throughout my 37 years and I have pulled through. I have managed to complete my schooling, work in a number of various jobs, dealing and taking the biggest step in ones life of committing yourself with your partner in the ceremony of wedlock and taking on the challenges of having a child. Also another challenge in my life was to help my husband who is also a thalassaemia major patient who apart from his thal suffered many health issues such as surviving a heart attack, cancer, legionnaires disease and many other issues that we thals face. His a strong person and never gave up the fight for life.

I have been blessed with the ability to travel and see for myself how other patients world wide face issues with living with this condition but never loose sight of what one can do. I have met with many patients from different parts of the globe that have successful jobs such as doctors, radiologist, attorneys, IT consultants and the list goes on and on. We need to share our stories amongst our group to raise the complications that one may face with thalassaemia major, your experience may send off a pre-warning sign of what to look for with our younger thals.

Lets all work together in raising the awareness and make this a happier world to live in with such a complex condtion.

Miaki

Raising the awareness of Thalassaemia is a MAJOR (hahaha)  task. What gets me fired up is when I hear the words such as "eradication of Thalassaemia" and "disease" In our  society we think of a disease as something we can catch but thalassaemia is a "condition" that we are born with and live with.

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Having thalassaemia major isn't such a bad thing. I think many forget that there is worse out there. We should be greatful that we are able to appreciate the finer things in life such as the colour of the sky, watching the cloulds drift by, feeling the rain on our face, touching the grass and the list goes on.

My personal experience with thalassaemia has not restricted me at all. Yes I have faced many chanallenges throughout my 37 years and I have pulled through. I have managed to complete my schooling, work in a number of various jobs, dealing and taking the biggest step in ones life of committing yourself with your partner in the ceremony of wedlock and taking on the challenges of having a child. Also another challenge in my life was to help my husband who is also a thalassaemia major patient who apart from his thal suffered many health issues such as surviving a heart attack, cancer, legionnaires disease and many other issues that we thals face. His a strong person and never gave up the fight for life.

Agree completely .....

And, agree again......

And, again.

More power to you, Miaki. Live your life to the fullest. You are such an inspiration.

Poirot

Miaki and Poirot, you two are an ideal inspiration for all of us espcially regariding this very issue. Furthermore you guys are real lucky to get married and finding a partner that understands Thal.

Please shed some light about your experience as most of the people in Pakistan don't think that Thals are marriage material.

I would really like Miaki to tell her event about marrying a Thal. and proving to everyone that even two Thals. can have kids without Thal. Major.

I am interested in this issue personally (Ahem...) and I need all useful advice possible from you guys.

Hello Sajid!
People are surely missing out if they think that thals aren't marriage material in Pakistan!  Unfortunately that is an idea that needs effort to change.  You just need to get out there and go go go!  Show them how wrong they are!  Show them that you are just like anybody else - that you have a condition that needs treatment, but that it can be managed and you can live a fulfilling life.  I feel a little self conscious saying things like this because I do not live with thalassaemia, but I see others who do and they seem to be able to achieve whatever they set their mind to.  People might think that thalassaemia means you are really sick all the time and can't do anything, or that you will die at age 12.  Unless you can share your story in some way to show them otherwise, they won't know that it is different!  Good luck!  I will prompt Miaki to reply for you.
Bye!
Sal.

Hi Sally,

We know this and we know many thals that marry and have careers and lives like everyone else, but too many people don't know this and attitudes need to be changed in so many places. You are so right. Thals need to show people they are wrong. In places like Pakistan, India and Maldives the public doesn't know or understand and we have to give all the help we can so our friends can have everything life offers.

We have just lost a member of our group and this very issue was a big part of why. When one only sees no hope and people around say you are different and can't be like us, then it can become very hard to go on. What point does life have when there is no hope seen?

We have to change things and it will take a lot of work to do this. I saw it first hand in Maldives and we have to do everything we can to change the attitudes and beliefs of the public there and anywhere  people still don't understand and accept thals. This is a huge job but we have no choice but to do it. And I do believe we can do it. In the age of instant communication, it is much easier to reach people and we need to find ways to get their attention so we can show them that thals do have real lives all around the world and that they should be allowed the same opportunites everywhere.

Please, don't ever give up!

Hi Maiki..

Fantastic posting.. after I met you and have known you, I have'nt stopped admiring and respecting you and as I had told you that I just have to meet you someday.

Thalassaemia is not a "disease", it is a condition that you are born with and that should not be an hindrance towards leading a fruitful  and meaningful llife.
I have always tried to instill in my daughter that it could have been worse..here at least she had a way out. And she has been a fantastic child, given me all the happiness that any mother might ever want in all aspects of her life.. and if today if I were to start my life all over again.. I would want her to be my child over and over again... so parents please dont despair! :smile2

shikha

Hello again,

Shikha thank you for your kind words. I too admire you as you have supported & not sheltered your daughter. Parents need to be like you & others out there that support their children.

I told this story at the Dubai conference when I presented at the patient/parent forum. When I was younger I use to blame my parents for bringing me into the world of thalassaemia. I thought they hated me & they wanted me to suffer. At the age of 16 when I was at my peak of rebellion against my parents & the world in that matter and I thought I knew it all, my mother took me to a school were she volunteered her time as a carer for children with special needs.  Upon arriving at this school (I still thought my mother was nasty, but she was about to teach me the best lesson in life) she says to me “ I am about to take you into this school, when we leave later in the afternoon I will ask you one simple question. I will not be with you once we walk in here your on your own to do as you please”

I walked in & I was left speechless, I felt like a complete idiot that I carried on about my life. I saw children / adults in wheelchairs, in beds, some where missing limbs, others were blind, others couldn’t walk, talk, needed aid in feeding & the list goes on. And here was me who was able to play ball with my friends, go shopping, get an education, & go out with my friends to the movies, for coffee. I didn’t need help in dressing, feeding & so on.

When my day visit finished & I got into the car with my mom for the ride home, not a word was spoken. My mother says to me “is there anything wrong with you?” After a long pause & tears rolling down my face I responded with a simple “NO”

My mother that day taught me the best lesson ever, go out there do what you want to do, become who you want to become, nobody has the right to stop you or take nothing from you. You have a disorder you need to take the right motions in life to keep everything in order so you too can see the world that is at your feet.

That changed me & that is what has made me who I am today. I thanked my mother for that special lesson. I was able to move forward & forget about the kids who use to tease me at school for being short, missing out on school often because I was constantly not well & the list goes on. We have to learn to ignore them because these people are not worthy of your company, your friendship, your trust of YOU!

Sajid asked me to shed some light about my experiences in one of his earlier posts. That above was the best experience in my life. I didn’t tell people I had TM until I felt they were my friends & that I could confide in them. Sure people will talk about you no matter what & it doesn’t matter what country you live in. People like to look what is happening in other people’s gardens but their own. Whilst I was growing up I also had to deal with living in country were there was some racial discrimination & that was hard but you over come things.

Live each day as if it was your last. Never say I’ll do that some day – do it then and there. I hope I have not babbled on too much but we all have inspiring stories & we can ALL learn from one another.

Love you all and go get them!!


 

Miaki,

This is an absolutely fantastic post! 

I am going to try to make sure every single Maldivian thal reads this. It is exactly what they need to hear. The lesson you learned that day is one we all should learn. They say walk a mile in another man's shoes and that day, you saw exactly why that is said.

Thal is tough, but everyone, you are tougher and please don't EVER forget that. 

Bravo Maiki... and  yes Andy..I think each and every one  should read  Maikis posting and be inspired and not despair.
As a parent it may be hard at the begining, but it is you who will have ACCEPT it in the first place that your child has a shortcoming but nothing that cannot be overcome. It could have been worse.

And Andy... you spoke about making a kind of a video of all adult Thals who are leading perfect lives, so that others could see that there are no reason why all cannot. Maybe we can start by requesting them  to put up their photos with their spouses / boyfriends and kids!!

Maiki has the cutest boy with a " Oh my God.. what a SMILE".... I am sure others would love to see him. For me it was love at first sight!!

hey Maiki.. how about my suggestion?

 :smile2

shikha

Wow! Miaki,

That's quite an inspiration! You have a great mom!

hi Miaki
its wonder full when i was reading that i remberd lots of things in my life too

-faizan-

This is an interesting topic to discuss, I totally disagree any one to be discriminated by a medical condition on any ground. Whether its social religious or matrimonial circumstances. There are no reason thal minors or majors should not get marry any more. We now understand the science of thalassemia and we know how it’s inherited.

As all of us here might know that there are chances if two thal minors get married if they need a child there is 25% chances they might get a thal major child on each pregnancy. But still there is 75 chances they might get a child do not depend on transfusion. In the other hand knowing this fact with each pregnancy they can do a prenatal diagnosis. Since 75% chance is more likely than 25% chance of thal major, therefore those who has enough knowledge and know the facilities where they can do prenatal diagnosis, thal minors can get married and have children.