Thalassemia: Love and Needles

[msapril68]

I've been diagnosed with thallasemia major when I came to united states. I was high school at that time. Now I am 44 years old. My doctor referred me to hematologist and oncologist back then and they never tell me that I need to have blood tranfusion. I'm taking ferrous silfate but I don't know if this help me.. What is exjade?.

[iboogiebear50]

I have Beta-Thalassemia Major too. I was diagnosed at 6months old in Athens, Greece when my dad brought me in with G.I distress. I was then abandoned at the hospital and I was adopted overseas (MI, USA) when I was 2 1/2. I am very hesitant to try Exjade due to new warnings. I do desferal 7nights a week for 12hrs. For those who take Exjade what are your feratine levels. have they improved being on Exjade or are they the same?

[bigdawg729]

Your very brave Alex!! My son has thalassemia too, hang in there!

[iNorman01]

I'm unaffected, but a carrier of thal...

[CryingForGaza]

I used to have Thal major too ;) 19 and all better :D Just have to take Penincilin (or however its spelt)

[shizzy43]

And to all the people taking Exjade with water, try taking it with pure juice i think it's alot better.

All my love to my fellow Thals!! <3 xx

[shizzy43]

Hey Alex, i was diagnosed with Beta Thalassemia Major when i was 8months old, i am now 21 and have experienced everything you are going through. Keep being brave and live life with a smile and to the max!

In the video Alex is using butterfly needles for his desferal have you tired using thalasets? I used to use butterfly needles aswell but found better to use thalasets.

[adelline27]

Hi, Alex! U are a great boy, I admire you so much! I know how you feel in every momment of your life... I am a clinician psychologist, but first off al, I'm a major thall pacient for 28 years old.... It's tought, but our life desirved to be live! Goodluck in everything!

[thug0071984]

Hey Alex, you're a champion!

I also have Thal Major and I'm 26 now, thank god for Exjade!

Also looks like a cure is on the horizon, look up Thalagen, things are finally looking up for us!

[zeeshawn15]

I have Beta Thal Major, I was diagnosed when I was 8th months old. Since then I was getting transfusions every 4 weeks. When I turned about the age of 10 I started to get 2 units of blood, and as you get older and "bigger" you need more BLOOD. I started on the pump thing he is on for iron overload and about 5 years ago there was this new oral med called Exjade like s4b4h100 mentioned. Treatment for this anemia also ends up at a point where you shall get a splenectomy like I did.

[s4b4h100]

Why is Alex not on Exjade????

[ayooota93]

eugie92

I am 17 as well and I have thalassemia major =D

I used to use those needles but now I use Exjade ;D

Good luck ~

[udaay1]

thanks for ur information

[stiso2485]

hey alax i just want to tell you that you are a brave person, and to your family that they are pretty remarkable as well. good luck

[eugie92]

wow fantastic video alex! I'm 17 and I have thalassemia major too. I remember when I used to have needles :s I was wondering if there is other treatment available for you? I'm on chelation tablets now (called exjade) and they have made life so much easier! Keep up the treatment and keep smiling :)

[zeeshawn15]

@eugie92 Lol don't you just with those pills come in some flavor, LOL! I am on those meds as well, I take it with water. LOL! Taste nasty but way better then the PUMP

[eugie92]

@zeeshawn15 haha agreed!

do you ever take it with juice?

i take it with water too - much easier to skull it quickly!

[zeeshawn15]

@eugie92 The first day when I started on Exjade I used OJ, but my doc said for better results I should use water.

It is one of the best things ever created.



[ayooota93]

great video that shows our life

thanks for it

and for Alex good luck boy ;)

[Lili555rose]

Alex,you are so brave.

I was reasearching about thalassemia and found your video.I will show it to my classmates and we all admire you and your braveness.

[greekguy789]

alex this is your cousin you are the most bravest kid ever, the things you go through you dont deserve you inspire me to be brave even though i still cant ha. You are an awesome cousin to me and i hope ive been good to you to your the best

love,

DGP

[chikflick101]

wow i have i this blood disorder i was told about 7 months ago

[munazza1998]

my necie has this problem too..yes its true these childern are very brave..

[CousinoMacul]

You're a brave young man, Alex!

[xloquita18x]

wow alex you are my hero i have thalassemia but minor so i dont have to have the blood trasfutions likr you but i admire the fact thst you are so younge and so much stronger then me because trust me i am 23 years old and what yo do i dont think i could handle

[juneyteen]

im a blood donor myself and i am indeed so proud how my blood help other peoples lives...to the parents..well done..its been a tough moment i know but God is good always...and He is always here with us..GODBLESS

[crazy10152]

dude i have thalassemia aswell ive had it my whole life and im 15 now so yup its amazing how a kid has such a big responsibility to do that like the little kid in this vid :D

[Kazoo4U]

Soo happy I get pills now and don't have to get a shot everyday

[TheodoreCao]

My Brother has Thalassemia.

[zeinia1980]

Hey Alex,you are such a brave little boy,i know quite a few kids with thalassemia and i know you all are so brave :) .

[naomi1280]

he is such a cute kid and so brave :)