Discussion Forums > Thalassemia Major

Please Help Me Understand Thalassemia

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Delsia:
Tonight my mother called me and said after three weeks, long horrible weeks-she has Thalassemia Major-I don't know anything about this-other than what I've read over the past three hours-Please tell me what this is, what I can do, anything that will make her chances better-where is the best MD-Hemotologist-distance will not be an issue-what do I do????????????????????????????????Thank you very much for allowing me to register on this site. And I sincerely thank you for any help that you would give.
D

Andy Battaglia:
Hi Delsia,

First thing I will say is that you should tell your mom she has been misdiagnosed. Thalassemia major is fatal if not treated and she would never have survived to adulthood if she was a major. It would be possible that she is intermedia or minor but we would need more information about her long term condition to give you some idea what it is, if it is thalassemia in one of its forms.

Where are you located? Your mom should see a hematologist who has worked with thal cases before. I can't believe a doctor would say major to an adult who has never transfused. It's just a case of speaking about something without doing the proper research into the condition. Let us know where you are and we can direct you to the proper hospital. I assume you are in the northeast US and there are many very good places to go for help. Also, tell us more about what symptoms your mom has had.

Delsia:
Thank you for your time and the thoughtfullness that you are showing-this is the case: my mother is 63-in great shape-or so I thought-she lookls 40- and for about a year she said she just felt so tired-she has always been very active I'm an only child-but she was diag'd with elevated sugar levels last week-has been diag'd with anemia for years-and tonight when she called she said her md ask if she had/has any Metiteranian decendants???after pulling some old books out and the web-I understand that-I'm afraid........ this has apparently taken a beautiful young lady _Lisa Cammilleri- this monster has no respect of age -Please --I want to help my mother. we are close to Emory and Mayo Clinic-just please tell me if you know the best-anywhere-will peanuts really help her-she looks as beautiful as ever but her color-she is blue eyed and pale-now really pale-and really really tired-all the time-almost going to sleep driving ...please tell me what to do.
Sincerely,
D

SalD:
Delsia, just to give you a quick summary:

* Thalassaemia is a genetic condition that causes anaemia, and if you are born with thalassaemia major your symptoms usually develop in the first year of life
* As Andy has mentioned, thalassaemia major needs LIFELONG treatment with blood transfusion from the time of diagnosis (first year or two of life)
* Thalassaemia MINOR however, often has no symptoms or milder symptoms
High sugar levels can cause drowsiness.   Being able to control your blood sugar level is very important.  Did the doctor give her any information about this?  It might be worth seeking more information from your doctor about why your mother's blood sugar levels are high and how to get them down.

It is often very hard to remember everything that a doctor tells you when you are not feeling well.  Perhaps you might be able to attend the next appointment your mother has, and help her to ask the doctor why he/she thinks your mother has thalassaemia major and what treatments he/she thinks might help your mother.   It might be possible that he means thalassaemia minor.  You could also ask questions about the sugar levels.

I hope this is of help!  It is a difficult time when someone you love isn't feelling well and you aren't sure what the problem is.  Good luck finding all the information you need!

Sal.

Delsia:
Again I'd like to thank you for your quick reply-I've made my mother a new appointment-even though my mother is a sharp cat-she really crumbles when it comes to her own health. However, I have not been asleep-I've read all night-and now after reading-I think she has a ver high chance of Thals-could this, if minor or intermed, turn into major? I am a very firm thinking that unless you experience something....................all of the doctors and books can rattle on......that is why I'm here.
Do any of you mind telling me what symtoms, for minor and intermed., have you had-past and present? What treatments work and which ones do not?

We are about twenty miles out of downtown Atlanta, GA-  - have a vacation home at Ponce Inlet which runs into  Daytona Beach-Mayo Clinic is in Jacksonville-bbut I can get her anywhere she needs to go
what specialist would you recommend?

Thank you all so very much,
D

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