Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: nacmacfeegle on May 21, 2007, 04:41:05 PM

Title: Hello from London, innit. :-D
Post by: nacmacfeegle on May 21, 2007, 04:41:05 PM

Hi, I am Nac, 30 year old Mum to 2 delightful kiddiewinks.

I was diagnosed with Alpha Thal trait in pregnancy with child number 1, which was very scary at the time (DH had to get tested, and they gave us very minimal and terrifying info.)

Apparently I do not fit the "profile" of a Thal carrier - I am Irish, pmsl.

Neither of my parents are carriers AFAIK. I have had low hb, which has been unsuccessfully treated since the age of 16; once I found out it was thal and did some research, I started refusing the iron unless my MCV was in the 70s. In fact, next pg, I think I'll just refuse tests altogether.  :rolleyes

So, HI! Nice to be here x

Title: Re: Hello from London, innit. :-D
Post by: Zaini on May 21, 2007, 06:13:05 PM

Hi Nac, :hithere

welcome aboard,rest be assured you have chosen the right place to get your answers,i am also thal minor,and have a daughter with thal major, this site helped me a lot with all the issues regarding me and my daughter,and i don't think it's possible that u have thal without atleast one of your parents having it,it's a genetic disorder so it comes with genes from our parents,may be they are silent carriers which is more difficult to detect i believe,did they ever got their DNA checked? our administrator Andy would be of great help to you for every information.

with love,

Zaini.

Title: Re: Hello from London, innit. :-D
Post by: Andy Battaglia on May 21, 2007, 07:38:02 PM

Hi Nac,

Zaini is correct. All thalassemias are hereditary disorders, so if you have alpha thal trait, one of your parents is also a carrier. However, alpha thal trait is almost impossible to detect and is normally diagnosed by family history, which leads me to ask on what did they base your diagnosis? Even DNA testing may not be able to determine alpha thal trait.

Taking iron is not the correct treatment if you do not have iron deficiency. Iron deficiency needs to be determined through serum ferritin tests before taking supplements.

I don't understand why they frightened you about the pregnancy. There is no chance of having an alpha major unless both parents carry at least two alpha genes. At most, you might need transfusion during delivery if your Hb dropped suddenly.

If you are an alpha carrier your children could also inherit the gene. My advice is to find a good thal-familiar hematologist and get a proper diagnosis, since you are correct in that alpha thal is very uncommon among Irish. It is predominantly found in people of east Asian or African background, although it is occasionally seen in other groups.

Title: Re: Hello from London, innit. :-D
Post by: Lyanne on May 22, 2007, 12:57:58 PM

Hello there! Welcome! to the site. Take care!keep in touch!

Title: Re: Hello from London, innit. :-D
Post by: sydneygirl on May 25, 2007, 10:44:41 AM

Hello Nac,
welcome to the thal site! hope you make great new friends.Also where r u from in london?