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Please Help Me Understand Thalassemia

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Offline Delsia

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Please Help Me Understand Thalassemia
« on: June 01, 2006, 03:14:55 AM »
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
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Offline Andy Battaglia

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Re: Please Help Me Understand Thalassemia
« Reply #1 on: June 01, 2006, 03:26:38 AM »
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.
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Andy

All we are saying is give thals a chance.
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Offline Delsia

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Re: Please Help Me Understand Thalassemia
« Reply #2 on: June 01, 2006, 05:41:17 AM »
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
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Offline SalD

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Re: Please Help Me Understand Thalassemia
« Reply #3 on: June 01, 2006, 07:07:06 AM »
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.
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Offline Delsia

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Re: Please Help Me Understand Thalassemia
« Reply #4 on: June 01, 2006, 11:49:57 AM »
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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Kathy11

Re: Please Help Me Understand Thalassemia
« Reply #5 on: June 01, 2006, 11:27:18 PM »
Hi Delsia,
IT warm my heart to read how caring your are towards your mother, she must be very  proud of you .
 Despite of your mothers' independance she is in need of lots of help in regards to her health.
It is very hard searching for a diagnosis and proper care but I believe its possible .I'm so glad you have access this site its a good place to start and we are all here to assist and listen.I found this site caring and friendly and the members  can never do enough to help in which way they can. Good luck and god bless you both.Kathy :hug








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Offline Andy Battaglia

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Re: Please Help Me Understand Thalassemia
« Reply #6 on: June 02, 2006, 02:21:36 PM »
Hi Delsia,

Thal minor cannot turn into major. There are two beta hemoglobin genes and if both are beta thal genes, the result is a major, or possibly intermedia, which is a less severe mutation of the genes.

Intermedia is also unlikely unless your mom has had symptoms for 20 years or more, as symptoms would have become apparent no later than in her 30's or 40's, if not before then.

Thal minor can become more of a problem as one ages as we have occassionally read in posts from older patients. Do you know what the doctor based his diagnosis on? Was a complete blood count done? For starters you need to find out what her hemoglobin level is. It may be a good idea to have her blood work sent to the Mayo clinic for interpretation. Thalassemia is not common in the south and chances are her doctor has never seen a case and unintentionally has caused alarm with this misdiagnosis.

For now, please take some relief in knowing that major is 100% impossible. Majors depend on frequent blood transfusions to stay alive and your mom could not possibly have it and be alive in her 60's without life long transfusions.
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Andy

All we are saying is give thals a chance.
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Offline §ãJ¡Ð ساجد

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Re: Please Help Me Understand Thalassemia
« Reply #7 on: June 02, 2006, 04:30:25 PM »
Hello Delsia,

You can safely rule-out Thal. Major or any other type turning into a Thal Major. It is most probably that your mom has Thal Inter media.

You can check out their respective sections on the main page of the site and you can also find some useful info about Alpha/Beta types of Thal. in the documents section of the site. (Scroll below on the main page to see it)
« Last Edit: June 03, 2006, 08:05:16 AM by Sajid Rauf »
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Offline §ãJ¡Ð ساجد

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Re: Please Help Me Understand Thalassemia
« Reply #8 on: June 03, 2006, 08:13:50 AM »
I forgot to add something last night as a storm was brewing up and I had to shut down for the fear of electrical failure and surges that could damage my PC as I already had one of the worst day of my PC experience that morning.

Anyway, I was thinking that there should be big separate link/section on the top of the main page with the title "What is Thalassemia?" or "About Thalassemia" containing general info about the disease and links to the other sections of the site such as the boards for different types of Thal. for the newbies or non-Thal. visitors.

Mr. Andy?
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Offline mustho

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Re: Please Help Me Understand Thalassemia
« Reply #9 on: June 03, 2006, 10:07:53 PM »
Hi Delsia, as others has said its very unlikely or rather impossible you mother to be a thalassemia major undiagnosed till that age. And also as Andy said its very unlikely its thalassemia intermediate either. If at all there is any from of thalassemia its likely that can be thalassemia minor ( heterozygous for thalassemia). But many times this type can mimic most common type of anemia every where in the world, that is iron deficiency anemia. As your mother is in that age where it can be likely differential diagnosis iron deficiency. To diagnose or differentiate this sometimes some hematologists treat their patients with iron tablets and the blood parameters are corrected. If it still persists after treatment with other hemoglobin investigation they can rule out thalassemia minor.

The important thing to keep in mind here is, thalassemia minor is not clinically significant condition where any form of treatment is needed as such neither it has any kind of life threatening complications. It is only a mutation in your hemoglobin which makes you mild decrease in your hemoglobin level. My advice is tell your mum not to worry much about thalassemia as such, and if at  all this need to be rule out properly, investigate for CBC, Quantitate hemoglobin and see blood picture.
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Offline dani75

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Re: Please Help Me Understand Thalassemia
« Reply #10 on: May 20, 2007, 05:04:35 PM »
hi Andy...

i read this article...

and i don't understand what you mean with this...:


why you mean that a thal. can't survived to adulthood??????????

now i'm 31 yrs old...

you mean that it's impossible for a thal...to be older than 40???

help me to understand...

thx

Quote from: Andy on June 01, 2006, 03:26:38 AM


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.

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Offline Andy Battaglia

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Re: Please Help Me Understand Thalassemia
« Reply #11 on: May 20, 2007, 05:20:36 PM »
No, what I said was UNTREATED thal majors cannot survive into adulthood. If no transfusions are given, majors die at a very early age. Treated thals can live well into their 40's and 50's and maybe even 60's these days with the lifespan getting longer all the time.
« Last Edit: May 20, 2007, 05:33:24 PM by Andy »
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Andy

All we are saying is give thals a chance.
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Offline dani75

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Re: Please Help Me Understand Thalassemia
« Reply #12 on: May 20, 2007, 05:54:59 PM »
andy...

you know thal major patients...at the age of 40's or 50's??????...

thanks a lot for your answer...



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Offline Andy Battaglia

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Re: Please Help Me Understand Thalassemia
« Reply #13 on: May 20, 2007, 06:12:51 PM »
I personally know a man in UK who is in his late 40's and doing quite well. At Oakland they care for many patients in their 50's. It is very possible with comprehensive treatment. And treatment is improving rapidly. Keeping ferritin low is of course the single most important factor in staying alive for thals.
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Andy

All we are saying is give thals a chance.
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