I just found the card of a reporter who interviewed some of us at the Dubai thal conference and looked up the article which I had never seen before. Ashish, Shilpa and I were interviewed.
http://www.godubai.com/Gulftoday/articlearc.asp?AID=60661&Section=Home
Thalassaemics meet to share experiencesBY SAJILA SASEENDRAN
Theirs is an ill-fated life. But they enjoy every moment of life and are cheerful like any other normal person.
Over a thousand thalassaemic patients from across the world have gathered in Dubai to share their experiences, update their knowledge about the genetic blood disorder they suffer from and learn the advancement in treatment methods.
The 12th International Conference for Thalassaemia Patients and Parents in Dubai has turned out to be major venue for thalassaemic patients to interact with their counterparts in other parts of the world.
The conference is being held on the sidelines of the 10th International Conference on Thalassemia and Haemoglobinopathies at Dubai World Trade Centre.
The child patients from many countries in the Middle East got an opportunity to attend the conference organised by the Thalassemia International Federation this time, thanks to the venue being chosen in Dubai.
Zaida Zedjali and Noorjahan Zedjali, two mothers from Muscat, who brought their thalassaemic children to the conference, said that such gatherings provided good opportunities for increasing the awareness about their children's genetic disorders."They have interacted with many thalassaemic children from various places. They have realised the differences among children, who regularly have their medicines and who do not. We will not have to force or convince them to take their infusing medicines," said Zaida.
"It is good that they understand the seriousness of their health conditions as well," she said. However, she opined that the organisers should have made arrangements for Arabic sessions for patients in the region.
"All the scientific sessions are in English and children do not understand anything they say. They should have arranged some simple sessions in Arabic to help these children learn more about their condition," she said.
Shilpa Arora, an active member of an Internet support group for thalassaemic patients, said that the organisers should have arranged a separate session for clearing the doubts of patients and parents.
Ashish R Vazirani, another member of the Internet support group said that he had been preparing for the Dubai conference since October, 2005.
"I began preparations from October, soon after the last thalassaemia conference ended," said Vazirani, an information technology expert from India, who hosts a website (thalassaemia.ws) and blogs giving in depth information for thalassaemic patients.
"Such platforms help us to gather information and meet people who matter to us and pass these details to other thalassaemic patients," said Andy Battaglia, the group co-ordinator of the support group
http://groups.msn.com/ThalassemiaPatientandFriendsAnother group of thalassaemic patients from Bahrain said that they attended the conference only because it was held in the region.
"Such meetings enhance their self esteem and help them learn many things relevant for them," said Dr Amal A Rahman Al Jowder, a health ministry official accompanying the Bahrain group.
Many child patients enjoyed the lighter part of the conference by attending the fun sessions organised at the venue.
They received handful of gifts from the organisers, got their faces painted and learnt to make bead works.
An exhibition of crafts and items made by thalassaemic children were also organised as part of the conference.