Hello Everyone!

Just wanted to leave a note here saying hello to everyone. I just joined this forum tonight after reading some of the threads here.. This is my first thal forum I'm joining!! very useful information and experiences!! It's nice to see people from all over the world getting together in one cause here on this forum and helping each other out! I've already found stuff I had no clue about on this forum and am sure I have lots more to discover... 

I'm beta thal major in my mid 20's. I live in the States and am originally from Pakistan (lived there for about 10 yrs).
The problem I have is that I know about thal and what I should be doing but am bad at really acting upon my knowledge. I always blame my lifestyle for noncompliance, working full-time and managing appointments and care at home can be extremely hectic. Perhaps all the friends on this forum can help me learn more and especially help me stay on top of my care.

I look forward to participating in this forum and learning from each other! I have been very quiet for the most part about my condition and had no thal friends here in the US to share my experiences with until very recently, but I think this forum will provide me a venue to interact wtih other thal major fellows across the globe.

Do we have many members living in the US on this forum?

Thanks,
SF

Welcome to the forum SF. I am glad you finally decided to share your thoughts and joined us. I am sure you will find lots of information and make new friends here. 

Hello SF and Assalam-u-alaikum 

I am glad you joined us,and i am sure you'll find a lot of information you need,it can be hard to manage everything with thal,but believe me it snot impossible once you set your mind on it you can do it,we have thal major members who are in their 40's and their ferritin is below 100,incredible right? but hard work and determination can lead you to there.We are all here for you.

Keep posting and sharing .

Zaini.

Hello SF and welcome home
manal

 

Hi SF,

I'll address the other topic in that thread, but yes we do have American members, although I find many Americans are not very active members. One reason is that the level of care in the US is pretty good in many places and I feel the other reason is that many Americans have an attitude that their doctors know all, and they feel there is no need for advice. I dispute this and I am sure even the top thal doctors in the US will tell you that they are still constantly learning about thalassemia and regularly revise their treatment protocols.

AS-SALAM-O-ALY-KUM SF ,
  , i hope you will find this comunity very caring helping and encouraging. i hope you will find all the answers of your concerns  .... best of luck buddy .. well ii m From Paksitan ..

Best Regards
Take Care
Umair

Thank you all so much for a warm welcome! I do now feel like at home, thanks!

Hi Andy,

Where in the US are you from? and where do you now reside?

Yes, I do agree we, Americans, are blessed wtih very good care here in the north America, but Americans still tend to look for 2nd opinions a lot, weird huh? The attitude of docs knwoing everything is changing slowly and we now see people doing their own research more and more, online, and asking other fellow patients. Especially, now that I know some thal fellows, I am finding the above to be more and more true here in the thal community, at least.

One problem we, Americans, face is that we're limited to where and what we can do cuz of certain health insurances we have, where I think (please correct me if I'm wrong), the people in Asia have a bit more freedom to go to whatever hospital they choose and can easily get on treatment of thier choice, assuming they can afford it.

The reason why American thal fellows on this website may not be as active could be due to really busy schedules and I have also found that this website is really slow to uplaod here in California. Not sure how it is in the Middle Eastern or South Asian countries.

Also, I may not visit this site during the work week as much as I would on the weekends, again, just cuz I know I won't even get a chance to do so. But, again, thanks for the knowledge that I have already gained this weekend, and I hope to implement that much during this week and come back for more, next weekend. I also have a couple of appointments this week and am getting transfused next weekend, so, I'll be pretty busy.

[Nothing on this posting is meant to upset anyone]

I was born and currently reside in upstate New York. Lisa and I were from the same city and attended the same high school, although many years apart.

I'm surprised you have trouble loading the site. Are you on a high speed connection?

As far as Asia, it really depends what country you're in and if you're a native of that country. Insurance issues in the US can be limiting but if you get a referral from one doctor to see another, insurance will often approve, if the second doctor is a specialist in the field. I have found that often you have to argue with insurance customer reps to get them to cover things that are covered by your plan, so if you know it should be covered, don't take no for an answer. You can usually find someone who does understand your insurance plan if you are persistent. Currently in New York State, Attorney General Cuomo is forcing insurance companies to reimburse patients for so-called out of network expenses that should have been covered originally and also forcing them to reinburse for underpayments for these expenses. This is a good trend and I think it will spread.

Hi Andy,

NY, cool!!   
Couple of my uncles and their families live in NY, Queens and Long Island areas.

Glad to hear there's effort being put in to resolve some of the health insurance issues. I'll be glad to hear the outcomes, please keep us updated, thanks!

Have a great weekend!
-SF