Hi All

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Hi All
« on: September 12, 2006, 12:45:02 PM »
Hi Everyone,
Thank you for such a great forum, for the last week i have been in tears and finally a light at the end of a tunnel!!!!
My name is Shayla I am 31 and have been married for 7 years. DH and I have 4 gorgeous kids under 5 and last week we found out our DD age 2 has Thalassemia. She did some more blood tests today to see exactly what type she has and to check a few other things i dont really know what. Both myself and DH are from European back ground, both Greek and I have been told that this blood disorder is hereditary and that it mostly effects mediteranian backgrounds. My lil miss was born with a collapsed lung and spent lots of time in the NICU and it seems that the poor lil baby doll has been through lots for her 2 years of life. This was just another head butt against the brick wall. We havent fully processed it yet and i am getting myself tested on friday as i have always been anemic and always very tired. I want you guys to share with me your experiences in relation to symptoms etc, my DS#2 he is 4 and he is always grumpy, looks pale all the time, dark rings under neath his eyes and always tired so it seems. He is very active and always running around so we have put down the tiredness to the fact that he has ants in his pants and never sits down but could he also be a carrier of thalassemia? he also has pre ariclia pits in both ears (little holes on the temple side of ear - like he has had his ears pierced) is this related to anything?? he has never had a blood test so nothing has ever been found but now that our little girl has been tested we are thinking of all the possibilities etc. Sorry to rant and rave really it is a big relief to have found this site. My anemia has been always put down to being pregnant or just having a baby (cause i have been pregnant every year for 5 years in a row!!) and the doc even tried to put my on anti depressants cause i 'looked' depressed, i tried to explain to him i was tired not depressed but he wouldnt have a bar of it so i changed doctors. iron tables, or liquid iron dont seem to work, it only makes me feel sick and i am forever fainting dh is constantly finding me around the house on the floor. does anyone else get these symptoms??
thank you all so much for taking the time to read my post, and thank you for such a wonderful forum its great to hear of others who are going through the same thing and who can share their knowledge.
hope you are all having a wonderful evening,
kind regards
shayla xx

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Offline Narendra

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Re: Hi All
« Reply #1 on: September 12, 2006, 01:03:15 PM »
Hello Shayla,

Welcome to the site. First of all, you might want to find out what type of Thalassemia your daughter has. It might be Thalassemia(Minor) or Thalassemia(Intermedia) or Thalassemia(Major). What type of blood test did they do? Was it Hemoglobin Electrophoresis?

In any case, as you mention - Thalassemia happens due to inheritance of chromosome # 11 or chromosome # 16 depending on what type of thalassemia gene is inherted. Similar, to how the genes are responsible for the color of our hair, our eyes etc, these chromosomes are responsible for our blood.

You might want to read as much as possible about Thalassemia and learn about it. It is good that we have sites like this to get lot's of information. Also, as you mentioned, you surely want to get yourself as well as your husband checked for thalassemia.

Also, where are you located. You might want to go to a doctor who knows about Thalassemia

-Narendra

Re: Hi All
« Reply #2 on: September 13, 2006, 12:42:44 AM »
Hi,
Thank you for your reply, we are located in Melbourne on the Mornington Peninsula are there any doctors who specialise in thalesemia near by that you know of?
Thankyou once again, hope your having a great day
kind regards
shayla

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Offline Andy Battaglia

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Re: Hi All
« Reply #3 on: September 13, 2006, 01:37:50 AM »
Hi Shayla,

We have several listings for Australia in our Treatment Centers section at

http://www.thalassemiapatientsandfriends.com/index.php?board=9.20

Including the one that all the people I know from the Melbourne area go to

http://www.thalassemiapatientsandfriends.com/index.php?topic=30.0     (thank you Miaki)

Quote
Monash Medical Centre
Medical Therapy Unit
246 Clayton Road
Clayton Victoria
AUSTRALIA 3168
phone: +61 3 9594 2756
The unit is open Tuesday to Saturdays from about 8am till 5pm.


You need to get your 4 year old tested. His symptoms could indicate minor or even possibly, intermedia. It is a definite must to have him tested. If your daughter is a major she will soon be starting transfusions. This group is a great resource full of information, and it will benefit you greatly to read the relevant posts.
Andy

All we are saying is give thals a chance.

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Offline SalD

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Re: Hi All
« Reply #4 on: September 13, 2006, 02:53:56 AM »
Hi Shayla,

Andy has provided the contact details of the treating centre in Melbourne - it is very good!  Your GP can provide a referral to see the specialist there.

You may also like to come and visit the Thalassaemia Society of Victoria (TSV), which is based not too far from the Monash Medical Centre.  TSV is a support and advocacy organisation for people with thalassaemia and their friends and families.  Please contact us (I work for TSV) if you would like any information, a chat, or even just to come and have a cuppa.  Our phone number is 03 9888 2211, email info@tsv.org.au, and address is 333 Waverley Road, Mount Waverley, Vic. 3149.  The office is unattended today, but I will check the email. 

 :hug

Sally.

 

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