Discussion Forums > Thalassemia Major

telling people about thalassaemia

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Kathy11:
I think that we do need to tell people, that we interact with , about thallassemia, the awareness is essential  for a better undestanding and to improve  acceptance in our communities, towards people whom is suffering  from  this blood disorder,

It is always good to be honest  at work especially when we give informations about our health, ,
E:G  Because,
(If one has an accident and is in need of claiming for compensation from insurance. Honesty is the best policies and the responsible thing to do).It is also an offence to not give accurate information.

Its bad enough to deal with the illness ,therefore  try to make it easy
on ourselves be open and live with a clear conscience.we dont need to worry about who know s about us, its not a shame to have this disorder
Try to think of the ramification of our action towards   future generation ,and let us advocate to stop the shame and secrecy about Talassemia.Lets  take part in making a difference in our society.
good luck
Kathy

Kathy11:
Dear Emmomy,
I feel that if a child is brought up in a loving home with loving parents and preper guidance he/or she will be well
equiped to face the wide world and all its kind and the child will be secure and can face whatever life presents.
So dont worry too much about the outside just love your children  the best way you know how and everythings else will fall to place. I'm so proud of you.
Kathy

Kathy11:
the word is proper

Zaini:
Kathy,

you are right ,but the thing is,i also wonder sometimes like Rebecca ,and i do feel like eesha,it's not easy here to share this information with people,they won't understand,they don't know much about thal other then thinking about it as a fatal disease,and ofcourse they'll feel sorry and will try to be sympathetic,even when i tell people that thal now a days i a manageable disorder ,they don't believe me,they look at me like "oh look at her ,she is just trying to show she is not worried",and ofcourse i don't want my daughter to be treated differently,we treat her at home as same as we treat her brother,so there are selective people who know about her condition,our immediate relatives,and her teachers of course.

ZAINI.

ThalGal:
I believe that this is a very personal matter, without any wrong or right way to go about it. 

My family and my close friends know about my having Thalassemia.  I choose whom I tell; I want people to know me the person, since Thalassemia does not define me, nor is it the most interesting thing about me.

Thalassemia is a part of my life; I go for blood transfusions, nightly infusions of desferal 5x a week, a handful of tablets etc., but it’s not my whole life.

A support system is very important, and mine has been wonderful, from my parents, my husband, to extended family and friends.  Also, being involved with an association, attending conferences, being pro-active is key.

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