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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55394 Posts in 5926 Topics by 6238 Members
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This is Thalassemia Patients and Friends,
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Lisa Cammilleri.
(1970-2004)
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Author Topic: Rethinking Our Response to Parents Who Have Just Discovered Their Child Has Thal  (Read 7404 times)
Andy Battaglia
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Will thal rule you or will you rule thal?


« on: March 01, 2008, 02:27:41 PM »

Our recent discussion about the famous photo of a young child getting blood, the "Tied for Life" photo, has made me realize the importance of our initial responses to parents of young thals, and how we can attempt to alter the perception and view that those new members have from their first contact with our group. I believe that we have the opportunity to set a positive tone by our responses. We have seen that Tied for Life can be seen as both positive and negative, depending on one's view, and I think we can do much good if we try to set that tone as positive from the very first moment a new parent comes to our group. We have heard that the image of a young child tied to transfusion is a harsh image, but we have also seen patients who tell us that image is a symbol of life, as it is the transfusion that allows thals to live a fairly normal life. That baby in the picture is now a 17 year old boy on the verge of adulthood. When you see it from that perspective, you can easily see why it is an image of hope. 

Treatment for thalassemia has changed drastically over the past few decades. Where it was once classified as a fatal disorder, it is now classified as a manageable chronic condition. Thalassemia is the only genetically based disorder where such a remarkable change has taken place. We need to approach new members with this view. We need to set the tone right from the beginning that thal is something to be dealt with and when properly dealt with, the thal patient can have a long normal life. This is no exaggeration. Chris and Andy from UK will both turn 50 this year. Maako, Akka and Waqas have all been married in the past year or so. Kat has two kids, is active in the organizations and is a full time student in medical school. The examples go on and on. Education, careers, marriage and even children are all realities for thals who get proper treatment and comply with that treatment.

The attitude of parents has so much to do with the success of the children. Let's work from the very first moment to adjust those attitudes in a positive manner so that parents can move forward with the strength and confidence that can guide them as they raise their children. Let's show them how much things have changed and will continue to change. Let's help them start with a good attitude and maintain that good attitude. Right from our first words. we need to be conscious of how what we say, can set the tone for how that parent will view thalassemia. If we succeed, we can change the lives of many thals in a truly positive way.
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Andy

All we are saying is give thals a chance.
Zaini
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« Reply #1 on: March 01, 2008, 03:04:34 PM »

Well Said Andy 

This group has always been a source of strength for me.

May GOD bless you all.

ZAINI.
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Manal
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« Reply #2 on: March 01, 2008, 08:08:49 PM »

I totally agree

Manal
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EMommy
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« Reply #3 on: March 01, 2008, 08:19:14 PM »

I agree!  It is so important to maintain a positive attitude.  Being a parent to a child with Thalassemia is such a blessing.  I never could have dreamed how my life would have been changed for the better.

In April we will bring home our 4 year old daughter who is also Thal major.  I only look forward to getting her home and looking after to to make sure she is as healthy as possible. 

Sometimes, others probe into the "what ifs", and "how do you do it" conversations.  They have no idea the blessing that they are missing out on.   Even a nurse started asking me the other day about our daughter's "prognosis". I knew exactly what she meant, and I don't even consider it.  Our daughters will live a long, healthy life with plenty of love and encouragement.

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Blessings,
Rebecca
Mom to 4- Two Beta Thal Major (chosen)
Narendra
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« Reply #4 on: March 01, 2008, 11:44:08 PM »

Andy and Group,

I totally agree with Andy. I think it is very very important to see from an angle who have never heard of thalassemia and suddenly the child is diagonised with Thal(Major). The parents do NOT know anything and today what most of the parents who can search for the world and try to find as much information as they can on thalassemia.

If they come here on this site, I think the best thing would be for them to see positive responses. I have heard of parents having heart attacks when they first hear their child have thalassemia. So, if they are worried and hear positive words, that will give them a ton of strength and seeing so many thals living a normal life, they will get a booster shot and they will view thalassemia with a different view.
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§ãJ¡Ð ساجد
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اَسّلامُ علیکم Peace be Upon you


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« Reply #5 on: March 02, 2008, 08:39:57 AM »

B+ve
4
Life!
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اَسّلامُ علیکم Peace be Upon you
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Zaini
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« Reply #6 on: March 03, 2008, 06:03:43 AM »

 

ZAINI.
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« Reply #7 on: March 03, 2008, 08:53:37 AM »

This is a very interesting discussion. Two suggestions if I may, either we can formulate a standard answer easy to understand and in plain english with a positive note for those who have just joined (this is just to start with) or we can add a section in our menu with some basic information about thal minor, intermedia and major and how the managemnt is done these days to ease the initial reaction.

I have noticed sometimes new members find it cumbersome to browse through the posts and try to piece together the information to formulate an answer for them. Usually it ends up with a post saying what they have learned so far and then they would ask the specific question related to them.

Just my two cents on this.

Thanks
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Manal
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« Reply #8 on: March 03, 2008, 06:01:38 PM »

I agree with Canadian family to go for any of the two solutions as it will save the repeatition of the posts, good idea

Manal
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