Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: sunniefaith on May 19, 2008, 06:21:06 AM

Title: Questions on Thalassemia Major
Post by: sunniefaith on May 19, 2008, 06:21:06 AM

We may be adopting a 3 yr that has thalassemia major. I've tons of questions running through my head at this point of time. Firstly, we're based in Hong Kong and we're from Singapore. Does anyone know of any support group in Singapore and Hong Kong. I want to know what's the long term health care for the child, what would the medical expenses be and generally, what to look out for children with thalassemia major. More specifically, the medical costs for Singapore and Hong Kong.

I am quite drawn to this little girl but at the same time, I need to research and find out exactly what to expect before we decide. We don't want take the chance of her being placed with a more affluent family that will be able to afford better medical care for herl

Thanks heaps

Title: Re: Questions on Thalassemia Major
Post by: nice friend on May 19, 2008, 03:34:05 PM

Hi sunniefaith :
i m umair :
i just want to inform that the THALASSEMIA INTERNATIONAL CONFERENCE 2008 is being held in Singapore  from 8-11 October 2008 .......... here is the link below for further details :

http://www.thalassaemia2008singapore.org/index.htm

Title: Re: Questions on Thalassemia Major
Post by: Canadian_Family on May 19, 2008, 08:44:50 PM

Hello,

Your best point of start is the introduction to Thalassemia. Please read through these two postings posted by Andy.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1571.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0

Once, you are finished reading than please feel free to ask questions.

Title: Re: Questions on Thalassemia Major
Post by: Narendra on May 19, 2008, 10:38:02 PM

Hello sunniefaith and welcome to the forum,

I think you have come to the right place as we have members here who have adopted thal(major) cuties. Following links can help you find and read information on those posts

http://www.thalassemiapatientsandfriends.com/index.php?topic=1236.0 - EMommy who is in the process of adopting another Thal(Major) child

http://www.thalassemiapatientsandfriends.com/index.php?topic=408.0

http://www.thalassemiapatientsandfriends.com/index.php?topic=1359

Title: Re: Questions on Thalassemia Major
Post by: Andy Battaglia on May 20, 2008, 12:31:31 AM

Hi sunniefaith,

There are thalassemia support groups in both locations. Both are listed in our Thalassemia Associations board at http://www.thalassemiapatientsandfriends.com/index.php?board=12.0

Thalassaemia Society (Singapore)

7th Floor Children's Tower
KK Women's & Children's Hospital
100 Bukit Timah Road
Singapore 229899

Tel: +65 96722886
Fax: +65 96725764

Email: info@thalsociety.org

Website: www.thalsociety.org  (There is a full contact list on the site)


Organization: Thalassaemia Association of Hong Kong
Address: P.O. Box 44379
Shau Ki Wan Post Office
HONG KONG
Telephone: 852-889-8399
Fax: 852-289-60258
E-Mail: calvin@ln.edu.hk
Web Site: www.thalassaemia.org.hk  (The website is in Chinese)


I would suggest you also familiarize yourself with this site, so you can learn more about thalassemia and the various health issues and treatments required. Care can be quite costly, so make sure you will be in a situation where this is affordable. In the west, much of the cost of care is paid by public or private health insurance, but I don't know what is available in Singapore and Hong Kong. You should also find out the policy of each country regarding bringing a child with known health issues into each place. Some countries are very strict and require this information before visas are approved. We have a member here who is still fighting to remain in New Zealand because his child's thal was not disclosed in advance. Hopefully, the local associations can provide you with this information.

Title: Re: Questions on Thalassemia Major
Post by: sunniefaith on May 20, 2008, 01:16:27 AM

Thanks heaps everyone!

Title: Re: Questions on Thalassemia Major
Post by: scammill on June 08, 2008, 02:08:41 AM

Can anyone tell me the difference between Alph and Beta Thal? I have a patient's mother writing to me and her daughter age 3 has been told she has alph thal and her crit is at 27 and she is losing blood in her stools and they do not know why. she has has all the tests and still no answers. She has not been transfused yet and they are telling her that her iron is low any help would be appreciated. Thank you Shirley Cammilleri

Title: Re: Questions on Thalassemia Major
Post by: Andy Battaglia on June 08, 2008, 02:17:06 AM

Hi Shirley,

The blood in the stools is troubling as it is often a sign of internal bleeding. This could be the result of a platelet problem. I may be able to tell the mom more with some more information. If you can, please have her contact me either through the group or by email. I believe you still have my address. I will do what I can to help, as always. We do have a new re-direct address for the group if you want to give her a link. The site address is still the same but the new re-direct is www.thalpal.com  Very easy to remember.