How to support thalassemia patients and their families

Thalassemia patients and families have a lot on their plates and in their lives.  These families seldom ask anything from extended family and friends.  Only for love, prayers and understanding from time to time.  They don't need sympathy, because they don't feel pity for themselves, but they do need understanding.  They need understanding because they sometimes have days in which they have tolerated more than their hearts can bare, and their minds are occupied with more worries than their brains can process. 

Some days, family members of thals may have low thresholds so thoughtless words of others may hurt them even more.  Somedays, they may be with you but their minds may be a thousand miles away.  Thalassemia families have many reasons to be optimistic these days, but they need to work very hard to gain the knowledge and use it in order to maintain good health. 

Thal patient's lives and schedules can be unpredictable, they need to spend time in the hospital getting transfusions and they need time for chelation.  They need you to understand that they have to commit time to their treatment and then they must deal with the work they missed while in the hospital.  Friends and family need to understand that thal patients and families may not have as much time as they would like to socialize.  With encouragement and understanding from friends and extended family they can find a comfortable balance. 

Families need to come to their own terms with this disease in their own time.  It is okay not to like it all the time, and it is okay not to like it at all.  It is important to like ourselves and it is important to like our lives.  Thalassemia is a challenge, but with love, support and understanding life can be good even with thalassemia. 

Sharmin

Thank you Sharmin, what i love in your posts is that you are really able to express what i really feel but unable to put in words. You speak my heart Sharmin

manal


PS: Sharmin you should be a writer, you have the ability to dig and analyse the emotions and put them in words

PS: Sharmin you should be a writer, you have the ability to dig and analyse the emotions and put them in words

Hi Sharmin,
i second , wat Manal said ... you are realy good at writing ...

umair

Manal and Umair,

Thank you guys, you are very kind and encouraging - I love you all very much 

You have both written things that I have felt but did not know how to write as well - I am so glad that we have this opportunity to express our shared thoughts and emotions here. 

Thanks again,

Love,
Sharmin

That was great Sharmin,  you truely spoke what most of us feel and are unable to express,thanks for being there for us  .

Zaini.

Support from extended family and friends can make an enormous impact for families with thalassemia.  It is unfortunate when we lack that.  I wonder if at times people don't know how to offer this support. 

What do you all think that extended family that is wanting to help could do to help make thalassemia easier for your family?

Sharmin

It's all the matter of understandiing i think,if they can only be supportive and encouraging rather then criticizing and sarcastic,it would make a great difference,A few encouraging and appreciating words can give you a new strength for the coming days.Life is a battle itself,wether with or with out thalassemia,thal can and do add sometimes a bit more stress,parents worry how their kids will do in coming life,teenagers don't like that they can't play sports or have fun,adults wonder if they ever get any sincere relationship,on and on,just a few good remarks can be helpful in many ways.

Zaini.