thank you

 : 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.

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.

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

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 "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.

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.

 

Hi Black Swan,

Sharmin is one hundred percent right,you are definitely not a thal major,so there is no need to panic,u might be a thal minor which in most of the people go unnoticed for whole their lives,you know when me and my mother came to know we were thal minors ,when my daughter was diagnosed with thal major,i was 23 years old at that time, and my mom was like something 45 plus,so we didn't even know that there was something wrong with us,as Andy advised you,do this test called hb electrophoresis,and everything will be clear.

ZAINI.

Thank you all very very much. You have been so helpful and understanding.  I modeled when I was a child and have been asked to when older and so I have the need to be perfect-I also was a child that was sensitive so I should never have been put into that environment.  I have body issues and am aware that these ideas are not true now.  I had an older sister who was not accepted by the modeling agency when i was five and she was fifteen she abused me terribly and scrutinized my appearance from then on feeling insecure.  but a five year old child cannot undersatnd the concept of her big sister being jealous.  I thought it was me.  That nurse never said I looked like a thal I think she based it on the fact that I had a low hemo count and I told her the anemia my doctors said was non-iron- poor.  I read a book which described thal's as having high cheekbones and a high forehead and I immediately jumped to the conclusion that this woman thought I "looked" like a thal.  She was commenting I think from the test because there is no way that I have chubby cheeks or am chipmunk-like.  I am just sensitive from a lifetime of being scrutinized for my looks:(.  It is sometimes hard to be attractive if you are not confident because then when people pick you apart because they feel less than it's like you don't get it and assume there is something wrong with you.  Thanks for all your help.  I do think it was a vitamin b deficiency as that is what supplements I am on currently.  My mom gave me coke bottles instead of milk and i was malnourished for most of my childhood.  You have a wonderfully supportive community and I think the way you help people is phenomenal.

I hope you'll find that if you stick to a healthy diet and get proper nutrition and avoid junk foods, that you will be able to maintain your health. From what you've said, it is very likely that you have suffered from some type of anemia in the past. From my personal experience I would recommend watching your diet and nutrition because anemia does recur if one doesn't pay enough attention to nutritional needs.

Family means so much and a negative family experience can do emotional harm. I'm happy when I see this group giving the kind of support they would hope to receive from a family. 

To the Lovely Swan,

"Beyong a wholesome discipline, be gentle with yourself,
You are a child of the universe,no less than the trees or the stars,you have the right to be here."

Quote by Desiderata

Beauty is skin deep ,I believe every human has his /her own beauty and we are all special.regardless of our creed.
Kathy

Thanks for the beautiful thought, Kathy.

I don't know if I've seen any greater beauty than the character I see in the faces of the thals I have met.

Beauty is skin deep ,I believe every human has his /her own beauty and we are all special.regardless of our creed

Wonderful words kathy !! just like you 

ZAINI.