Can Someone Please show me a link to Pictures of the Facial Deformities?!

Hi
Please I hear the descriptions but i would like to see the actual "deformities" they are referring to. I googled but all I came up with were descriptions no images. Thank you!

I hate that word "deformities". It makes you think " unnatural" and "ugly". But of all those with Thalassaemia that I know or have known, I can tell you truthfully, they all look normal and beautiful and no-one would know they have a blood disorder if they didnt tell them. Hey why dont you try looking at the pics posted on this site - that might be a start for you.

Good luck.

Youlla

Hi youlla,

With due respect to your observation. I however have to say that it is because that nowadays medical facilities have advanced a lot and much better treatment is available that all the complications of Thal. can be avoided if the children are transfused on time and are faithful to the chelation. Thals. are now living a normal life especially in the developed countries.

However, things were bit different in the past and are somewhat still different in the subcontinent. There are a lot of patients here that have the facial deformation and enlarged bellies due to lack of blood and enlarged spleens and liver. Although things are becoming better day by day but you will see that the Thal patients who don't get the proper treatment; look like brothers and sisters with the same facial structure.

Hopefully things are getting better and soon all Thal patients of the world will live a normal life. In fact this Thursday I have to make a speech in a local seminar regarding the improvement of treatment in Pakistan to motivate all the parents to send their kids to school and treat them like a normal person and follow the doctors' advice etc.

Wish me luck

Sajid,

 

Make sure that you emphasize what a huge difference having an inexpensive oral chelator can make in terms of both survival and ability to lead a normal life.

Thanks buddy.

I need all the tips I can get to influence the sponsors to help the cause.

Sajid,

The most important thing is to change the mindset of people regarding thalassemia and survival. The days of saying don't bother with them because they have thal are gone. Try to emphasize that with current treatments, thals now live well into adulthood and have useful productive lives, including having careers, marrying and having children. We opened many eyes in Maldives when we talked about these issues and you can do the same with your talk. Things can and will change but it takes some effort to change the way people think. Thal has been a stigma around the world and often thals have felt a need to hide their condition. Parents of thals need hope and they find much hope in seeing that this stigma is vanishing and thals are being accepted, as people realize they will not die by 20 years old.

Don't underestimate the impact your words can have. Giving someone hope is sometimes all that is needed to make a difference in their lives. Belieivng that it is possible is the very big first step many thals and parents of thals need.

Thanks again buddy.

It's really hard to educate adults regarding their own personal logic especially when they are poor and illiterate, but by showing them the living example; they are rendered speech less.

I wish I could show them all the amazing people that we have on this wonderful site; how everyone made their name in the society as a normal person by just setting the normal treatment on time and following the doctors' advice. Not only that, I would love to show them how we help each other out in every possible manner we can.

I love this place.