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thank you

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theblackswan:
 : :hugfriend Hi Thank you very much Andy and especially Sajid.  It is good to know I cant be Thal major which I'm sure would produce more bone abnormalities. Anyway, I am going to ask my dr. this week for the tests.  But if I am normal-like i said the cbc actually this past year has been normal when it wasnt for  years.  Well at least from age 16-28 because my first bloodtest believe it or not was at 16.  My symptoms have always been extreme fatigue, shortness of breath, low blood pressure, migraines, and extremely delayed  childhood development.  I have been a dancer and gymnast all my life and i would tire before everyone else even though I ws thin.  I get out of breath easily and I still don't have great stamina in trampolining.  My bone structure cant be that bad since i modelled in New York and elsewhere from age 5.  I definately have body perfection issues from that experience=) so when I looked at the symptoms that was the first place i went.  I would feel a whole lot better if I could see pictures of what they are talking about-in facial deformities-enlarged frontal bone and carpyl..... I really need to see photos because i need them to gage.  Can you please direct me to a site with photos?  Thank you guys so much:0) take care. :wink

§ãJ¡Ð ساجد:
Hi there,

This may sound stupid but the Thalassemics with facial bone deformities look somewhat like "The chipmunks" cartoon with protruding cheek and upper jaw bone.

This usually happen in under-transfused children as the bone marrow in these fragile bones overworks and expands to make more blood and as a result these fragile bones get deformed in the developmental stages of life.

ThalGal:
I have to say I am a bit disturbed by this description; it is a bit offensive to all thals. ???

§ãJ¡Ð ساجد:
Hi,

I know it is; as when I first read such description from a "professional doctor" to explain it to a lay-man and I was like :mad "Can't they think of something proper to describe it". I guess we hear stupid terms all the time like "pigeon chest and elephant skinned etc "from the the doctors when they try to explain it to a lay-man who can't figure out the medical terms that the doctors say.

That is why I said that it sounds stupid saying that.

Sharmin:
Dear Black Swan,
You are not a thal major - and I know this because of the fact that you are alive.
Secondly, thal minors do not have any deformities of any kind to speak of so there is nothing for you to gage - most thal minors I know did not even know that they were carriers, and they are all normal looking, if not beautiful people. 

Thirdly, even thal majors - who are often diagnosed in the first year of their lives because they cannot make red blood cells necessary for their survival - when treated properly can not be distinguised from so called "normal people".  Most thal majors I have seen are normal are perfectly normal - no one is able to detect anything in my son - unless if I tell them.  I think that he is adorable - i have 2 kids one thal major - one does not have thal at all - it is impossible to distinguish.

And the thal majors who have not received proper treatment, have suffered some facial changes - and they have a look which is characteristic of untreated thal.  But to me they are all as beautiful as my own children. 

Most importantly, you can let go of this phantom that you have a deformity because you may or may not be thalassemia minor - because it is not possible.  I am thal minor and I think I look fine - just like anyone else as most thal minors on this site can say about themselves.

 

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