Hey Friends.............How R U There???

uh oh.. another forum people can laugh at us going back and forth at each other.. 

Nooo, we'll leave that for our private forum.  I'm not subjecting these innocent people to that.   

 

Kathy, I definitely don't think it's all in your head.  I know from experience myself that many doctors don't care, or want to take the time out of their precious life, to help people who they feel don't have real issues.  There were plenty of times when I kept telling the doctors that something was wrong, or that I was in pain, and they sent me home because they were frustrated and didn't want to take any more time trying to figure out what was wrong.  They basically just thought it was all in my head half the time, and then something serious would happen afterward because they didn't listen.  That is the story of my life.   

I'm glad you are here with us, and I'm sorry to hear that you have gone through what you've been through.  Hopefully we can help you in some way, even if it's to let you know that it's NOT in your head, and that you have legitimate health issues that need to be addressed.  We're here for you when you need us.   :hug

Hey Richard,
Welcome to the group. 
Your "special friend" is doing a great job with this site. This is such an improvement over what we had at MSN and I think it'll only get better.

One more New Yorker in the group. Whoo Hoo!!! 

Your "special friend" is doing a great job with this site.

Awww, thank you, Andy.  You are doing a great job, yourself.   

Every time I see that "special friend" I crack up.   

Yeaaah, don't mess wit da New Yawkers. 

hahahaha.   

Awww, thank you, Andy.  You are doing a great job, yourself.   

Every time I see that "special friend" I crack up.   

Yeaaah, don't mess wit da New Yawkers. 

hahahaha.   

Yeah, as soon as Danielle gets dedicated to something all you can expect perfection.  Especially for such a good cause as this..  Keep up the great work Dee. 

As for you saying don't mess with the New Yawkers...?  Are you kidding me.. your so innocent you couldn't hurt a fly.. lol 

Yeah, as soon as Danielle gets dedicated to something all you can expect perfection.  Especially for such a good cause as this..  Keep up the great work Dee. 
As for you saying don't mess with the New Yawkers...?  Are you kidding me.. your so innocent you couldn't hurt a fly.. lol 

Aww, thank you, sweetie.   

And you are right, I couldn't hurt a fly.   

Hi,
   I'm Sajid Rauf from Rawalpindi/Pakistan. I was born about a quarter century ago and our family moved to Saudi Arab where after about a year my mom found out that I wasn't learning to walk at the normal period and kept sitting down in my walker after a few steps. The Doctors there diagnosed me of Beta Thalassemia Major. I had lost my elder brother when we were in Pak. At that time there was no awareness of the disease and docs here in Pak diagnosed him of Anemia and put him on Iron supplement which really messed him up. I was lucky enough to get to Saudi Arab in time and thus survived. Alhamd ul Allah (Thank God), the situation has imporved now in Pak. and the now there is sufficent awareness of this disease. Now we have moved back to Pakistan (some 10 years ago). I have completed my Graduation in Computer Sciences. I have a healthy sister who is marrierd and has two very naughty kids. The good news is that there are now better facilities here.

I totally agree with Brother Sajid, there wasnt enough awareness about this disease I have lost an elder brother in 1998 who was also Thalassemia Major, and because of lack of awareness and cure we lost him... well but now a days Pakistan is doing too much for this disease and its awareness!!

never forget: Something is better than nothing and Its never late !

Theres always a bright morning after a dark night!

CheeeeeeeeeeeeRs!

Hello everyone,

My name is Angela, and I am new to this group. Andy and Danielle have done such a wonderful job with this web site. Thank you so much for continuing Lisa's dream. She would be so happy that the site has so many members.

I was friends with Lisa for 9 years. We had so much fun together. She had such an amazing spirit, and was so happy and joyful, even after all that she went through. After she passed away, life was not the same for me and never will be. I still feel an emptiness inside every day, but I also know that she is with me in spirit, as she is with all of us.

One of the things I would like to say to the patients is that I hope you are all doing well and that you are getting your treatments regularly. We all want you to stay as healthy as you can for as long as you can, not only for yourself, but for all of the people that love you. So on the days that you are struggling with a needle, or on the days that you are feeling very tired, please come here and post your feelings so that we can support you. Don't ever feel like you are alone. We are all here to help you and to help each other. I certainly don't know everything about Thalassemia, but I know what I learned from Lisa over the years and I want to help those that I can - even if you just need to talk or vent about things.

I hope to get to know everyone in time. You are all such a wonderful group of people.  (I am going to have fun watching Danielle and her "special friend" Richard bicker back and forth. Haha.)

~Angela

P.S. Richard, try not to refer to yourself as Danielle's "special friend" on her Valentine's card. It may not go over too well...Heheh.

Hi All!  My name is Eva Chin and I am the Patient Services Manager at the National Cooley's Anemia Foundation (CAF).  I wanted to introduce myself and hopefully get to know all of you better.  If you ever have any questions or concerns I am available through email: eva.chin@cooleysanemia.org and/or phone 800-522-7222.  Some of you may already know about CAF and if not, CAF is a great resource of help for all thalassemia patients and their family members.  We have a variety of programs such as the Pump Program and Patient Incentive Awards.  We also have and insurance consultant to help with insurance issues/questions.

Here at CAF we're dedicated to helping thalassemia. For more information on our programs please view our website at www.cooleysanemia.org.  I hope to hear from you!

Hi Eva,
Welcome to the group. I was so happy to meet you in Dubai. Meeting everyone was such a positive experience for me. I can't say enough about the value of meeting the patients, parents, doctors and caregivers and all the organization people who help thals on a daily basis. If anyone has doubts about attending conferences, please don't. The friends and contacts made and the information learned is invaluable.

Andy it was nice to meet you also..I totally agree that patients should attend conferences not only to find out the latest updates on thalassemia but to meet other patients as well.  I just wanted to let patients know that there will be a Thalassemia Patient and Family Conference held by the Thalassemia Action Group this May.  It will be held in Las Vegas this year and I hope that many of you try to attend.  Also, we have chapters in different states if anyone is interested in getting involved with.  You can always contact me to find out if there is a chapter in your state.  It's important for everyone to feel like they have some form of support and I applaud both Andy and Danielle for their dedication to patients and this great new site!

-Eva

Hi Angela!

I am so happy you joined. We just wouldn't be complete without you here. Lisa's smiling down at us today. 

I hope you are well and hope that you can come back and visit us someday, up here in the great white north. Do you miss the snow? We'll be more than happy to mail you some...LOL.

I think Lisa would be so happy to see how her website has developed and how many people it has attracted. When we left MSN last week, we had over 600 members and the new site is growing quickly. I think she'd also be delighted to know that Danielle has worked so hard to continue Lisa's work.
Lisa, this site's for you!

Happy Valentine's Day Angela 

Love you

(I am going to have fun watching Danielle and her "special friend" Richard bicker back and forth. Haha.)

P.S. Richard, try not to refer to yourself as Danielle's "special friend" on her Valentine's card. It may not go over too well...Heheh.

LOL!  You should see us in person.   

I'd rather him refer to me as his "special friend" than any of the other names he calls me when he wants to get on my nerves ... like "Ice Queen."  He calls me that when he claims I'm "being cold" to him.   

I'm so glad you're here, Angela!  This made me very happy! 

Hi Eva!  Welcome to the forum!