Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: Prince on February 09, 2006, 08:44:11 AM
-
Hi Friends
It is realy nice to see all of you guys sharing & learning, as well as helping each other
Something about myself:
My name ia Puneet, generaly people call me Prince here (Thats my nick name). I was 2 yrs old when I was dignosed with Thal Major. I have completed my Masters in Economics & Managment three years ago, and now I am managing my Travel Agencie.
As I mentioned that I am from India. It is realy good to see many Associations and help groups are providing assistance now to help Thal Patients, but still a lots need to be done.
Friends I will be around now, & will try to participate in discussions all the time.
Smile
Prince
-
Hellow everyone
Well my name is Feroz and I am an Indian and have been working in Kuwait since 1999.
My niece by name Hadiya is diagnosed with Thal Major.She is 6 years old and receives
transfusions every 30 days.She is located in Bangalore ..INDIA.She looks so cute and healthy
and is also very hyper active.She has infact responded very well to kelpher and also to wheat grass tablets.
I have got tremendous info from MSN groups for thalessemia and friends.Thanks Andy and Danielle for making it to a new domain
and i hope that this site would definitely work wonders.
Cheers
Feroz
-
Hi there, guys! Nice to see you! Glad you made it to the new forum. :biggrin
I'll write up my intro a little later on. :veil
I am very happy to be working with Andy, and helping with the site, and I'm looking forward to my reward of seeing everyone else happy! :yahoo
-
hi friends ,
prince hi glad to see u here too , welcome here and i hope you will post and reply to all the post as you do there ,
hello all other friends and andy how are you , its been a long time we met on msn . see ya soon
regards
vikas kapoor
-
Hello friends
My name is Bharat and I am in the USA. My wife has thalassemia intermedia. Nice to see this new site. My wife had a splenectomy in India and is now getting treatment in the US. Thank you to Andy and Danielle who have given all thals and their families a platform to share their stories and help each other.
Talk to you all soon.
-
hello everyone,
I'm a 51yrs old who was diagnose with thalassemia minor(traits)and sickles cell,
that happened two yrs ago, when, I was getting lots of problems with my health,
I had severe depression. high blood pressure, high cholestrol and lots of body aches and pain.
I already suffered a minor heart attack lucky i went to hospital on time and was given oxigen and aspirin .I cann't cope with stressfull situations, heat or severe cold weather.
Still iI feel that i'm not getting the proper treatment I need ,as there has not been any research and no one is dealing with thalassemia, here in perth west australia.My doctor told me that they cann't change my biological make up.
So here I am suffering in silence and waiting for my death ,I 'm gratefull that I could be part of this website thank you for having me.
-
Hi Kathy,
Welcome to our group.
The combination of thal and sickle cell genes can cause a very serious condition. I think you may benefit by finding another doctor, more familiar with blood disorders. We do have several members here from Australia and at least one very knowledgable about sickle cell thal. They may be able to point you in the right direction towards finding proper care.
Please feel free to share your story and ask any questions that you may have.
-
hi Andy.
I'm so glad that at least one person recognize that my complaints are not in my head,its real.
Its very fustrating, visiting the doctor .I've changed doctor twice already and they don't seems to care much .I want to consult with another doctor but I dont know where to start.
three weeks ago. on a Monday at 02:00am ,I was admitted in a teaching hospital with the sign and symtomps of heart attack ,still the doctor there didnot bother much to find out what was happening with me.
I got so disappointed with the care that I discharge myself from the hospital and still no body gave a damn.
A
nurse told me that i will need to take aspirin for the rest of my life, it was then that I went to my gp and requested that she prescribed it to, to my surprise it is helping the pain.
-
hi there, glad to see you all here on this forum :)
-
Hi Friends
I am Hamza Khanani from Karachi, Pakistan, 26 yrs Thal Major.
Done Gradution in Commerce in 2000. Doing Job in IT Department in Garment Industry.
Wish you all Happy and healthy Life
Hamza[/color]
-
Hi All!
Am Ayesha Thalassemia Major from Karachi Pakistan, the site is AWESOME! now we wont have problem :D 3 cheers to Andy & Danielle!!! :cheer :cheer me and my brother Salman are getting treatment from The Aga Khan University Hospital, and we are taking Ferriprox and Desferal Injection both...
Thats it I guess :) If you want to know anything about Treatment of Thalassemia in Karachi, Pakistan then please dont hesitate :) am always here to help ya... infact all our friends are here to help each other :)!
Take Cares, Bye Bye.
-Ayesha
-
Hi Ayesha,
I'm happy to see you've joined. It's been a lot of work but it's worth it. Everyone loves the new site!
I'd like to mention that Ayesha and Salman run a great thal site at http://www.thalassemia.com.pk/#
Check it out. :biggrin
-
Hey there everyone. My name is Richard. I am Danielles "special friend" :rotfl
Glad to be apart of your group! :hug
-
Hey there everyone. My name is Richard. I am Danielles "special friend" :rotfl
Glad to be apart of your group! :hug
Ok, are you 12? You can't say "boyfriend"? :rotfl
Glad to see you all posting. Welcome to the new board, everyone. :biggrin
-
Ok, are you 12? You can't say "boyfriend"?
uh oh.. another forum people can laugh at us going back and forth at each other.. :rotfl
-
uh oh.. another forum people can laugh at us going back and forth at each other.. :rotfl
Nooo, we'll leave that for our private forum. I'm not subjecting these innocent people to that. :noway
:rotfl
-
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. :sadyup
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. :hithere
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!!! :yahoo
-
Your "special friend" is doing a great job with this site.
Awww, thank you, Andy. You are doing a great job, yourself. :biggrin
Every time I see that "special friend" I crack up. :rotfl
Yeaaah, don't mess wit da New Yawkers. :bat
hahahaha. :wink
-
Awww, thank you, Andy. You are doing a great job, yourself. :biggrin
Every time I see that "special friend" I crack up. :rotfl
Yeaaah, don't mess wit da New Yawkers. :bat
hahahaha. :wink
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 :rotfl
-
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 :rotfl
Aww, thank you, sweetie. :wub
And you are right, I couldn't hurt a fly. :biggrin
-
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. :happyyes
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 :heartred
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. :rotfl
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. :rolleyes
I'm so glad you're here, Angela! This made me very happy! :bighug
-
Hi Eva! Welcome to the forum! :biggrin
-
I think she'd also be delighted to know that Danielle has worked so hard to continue Lisa's work.
Yeah, because I'm the only one who had anything to do with putting this site up, right? WHAT ABOUT YOU?! :rotfl
Silly boy. :biggrin
Andy, you have done so much over the last 2 years. Lisa would be so proud to know what you have done for her and all the members. Thank you for doing so much for us! :hug
It has been my pleasure to help you and Lisa, and all of our members. :happyyes
-
Hello everyone, Im Salmaan, Beta Thal Major from India, now living in the US. Thal pateints and friends has been a great resource for me over the past few years. Its comforting to know other ppl are out there going through the same things as you are.
Im glad to see the new and improved website, looks excelent! Good job Andy and Danielle !!
Take care all.
-
Hi Sal,,
Glad to see you here. Are you going to the Vegas conference in May? Keep us posted on your exjade trial. Would Novartis being willing to sponsor you going to the conference?
-
A trip to Vegas to meet fellow thals would be great! But I cant get any time off work in May.
It would be great if ppl who attend can update the rest of us with info from the conference.
Sal
-
Hello Kathy,
My name is Bella and I am from Queensland Australia. I have three children, the two eldest were diagnosed with sickle cell beta thalassaemia 11 years ago and the youngest diagnosed as a carrier of sickle cell at birth. How long have you been living in Western Australia?
My children live happy somewhat normal lives, they have blood transfusions every 4 weeks and oral iron chelation everyday. I always remind them that there blood disorder is only a part of who they are and not Who they are. We are totally honest with them about their blood disorder. We include them in discussions and decision making about their body with their doctor, yes there are some restrictions with their condition and sometimes they can be unhappy with the choices available to them, but we work together to get the best possible solution.
Our son presents more like a sickle cell patient where he does get sickling crisis. They are very painful episodes that requires hopitalisation. Actually we just got out of hospital Wednesday. He experiences intense pain and only doses of morphine or phentoyl and hyper infusion of saline can help , however it only helps a little. We are always vigilant and make sure he is not in extremes of temperatures and do the best we can in making sure he is hydrated.
Kathy please if you would like to chat or talk to someone that knows very well what u are going thru please contact me via email. I will be able to give you the contact details of the group in western australia. They would be able to help you in your quest in finding a haemotolgist that is well aware of your condition and would be able to help and understand you.
warmly,
Bella,
Brisbane, Australia
. hello everyone,
I'm a 51yrs old who was diagnose with thalassemia minor(traits)and sickles cell,
that happened two yrs ago, when, I was getting lots of problems with my health,
I had severe depression. high blood pressure, high cholestrol and lots of body aches and pain.
I already suffered a minor heart attack lucky i went to hospital on time and was given oxigen and aspirin .I cann't cope with stressfull situations, heat or severe cold weather.
Still iI feel that i'm not getting the proper treatment I need ,as there has not been any research and no one is dealing with thalassemia, here in perth west australia.My doctor told me that they cann't change my biological make up.
So here I am suffering in silence and waiting for my death ,I 'm gratefull that I could be part of this website thank you for having me.
-
hi Andy thank-you amd thank-you to Bella I have already e-mail her and I'm hoping to hear from her soon. thank-you all.
-
Hello everyone, Im Salmaan, Beta Thal Major from India, now living in the US. Thal pateints and friends has been a great resource for me over the past few years. Its comforting to know other ppl are out there going through the same things as you are. Im glad to see the new and improved website, looks excelent! Good job Andy and Danielle !! Take care all.
Thanks, Sal. It's good to see you here. :biggrin
-
Hello all,
I'm a noob, but like many others here I was diagnosed at age two with beta thal major. Graduating in the spring with my B.A., and that's all I've got for now.
Peace,
Jay
-
Hi andy.
I have some good news ,I manage to get an appointment with a heamatologist here in perth.
I think that I'm finally going to get the proper medical care that I require .
I owe my gratitude to this web- site and its members especially Andy and Bella, you have been very helpfull.
I will keep you all informed of my progress.
thank-you very-much.
-
I'm so happy to hear this, Kathy! :yahoo
You definitely deserve proper medical care, and I hope that you get it with this new doctor. :biggrin
Let us know what happens. :hug
-
Hi Danielle.
I just read your posting in response to mine, regardings those careless doctors,
Thank-you for the encouragement ,I'm so glad you are all there and you make it so easily for me to reach out for help.It means a lot to me and I appreciate it.Thank-you again.
kathy
-
Kathy,
That's great news! Please do let us know what you find out about your condition and if any treatment is recommended.
I'm glad we can be of help. :smile
-
Hi Friends,
This is really a wonderful site.
Our daughter 3 Yrs Old is a Thal major, getting treated at The Sultan Qaboos University Hospital in Muscat, Oman.
Its builds lot of confidence when I read that thal major patients have led a very normal life and achived the best progress in their
professional life.
Our Daughter receives transfutions every 4 weeks. 5 days a week she gets Desferal & 2 capsules of Kelfer every day.
Awarenes of this genetic disorder is very low.Hope major corporates & other public organisations take this up.
People really need to know about this disorder.
I have spoken to couple of friends, trying to educate about thalassemia. But people say -- No this cant happen to me. This has to change.
Anyway, all the best to all of you
-
Hey friends
My daughter I have two daughters the Youngest one is thalessemia major she is 7 months old . she receives blood transfusion evry month . from this month only i have started giving her wheat grass juice lets see If it help her . Iwant to know if anybody knows any permamnent cure for this disease
with regards
Rupali
-
Hi Rupali,
:welcome to the site.
The permanent cure for this disease is via stem cell transplantation from Bone Marrow or Cord Blood which are subject to perfect matching donor.
Furthermore Gene Therapy is under development. Let's hope we achieve a breakthrough in this regard real soon.
Please feel free to ask more questions that you have in mind.
-
Hello Rupali,
Welcome on the forum,feel free to ask anything and try to visit this site regularly,it would help you a lot.
TAKE CARE,
ZAINI.