Winnie's Story

Winnie tells the story of her brother Howard's struggles with iron chelation therapies -- and the urgent need for treatment options for patients who receive frequent blood transfusions.

Category:

People & Blogs

Tags:

• medication
• drug
• access
• thalassemia
• iron
• chelation
• blood
• transfusion
• desferal
• exjade

[bokos1000]

yes anyone know ferriprox??

The best drug out there for thalassemia

it takes out iron from the most organs of your body and if you use and desferal 2 times a week its perfect

combine these 2 and high ferritin will be history

[Eternalbreeze]

Hi I can't help noticing that no one has mentioned ferriprox (also known as desferriprone or L1). I am a thal major too and unfortunatley I found the desfral hard to do...but loved the ferriprox but shame it didn't work on it's own. Had to combine it with the desfral too but now i'm on exjade. I should be greatful but finding that hard to take, the taste of grit everyday and the side effects but despite all this i'm not giving up yet. wishing all other thals out there good luck! xxx

[tifosilim]

sorry for the lost of howard. am a thal major as well and i had taken exjade for 1.5 years. what scares me really and thought of going back to def is the side effect of it. i would rather suffer the pain and live a happier and longer life then having exjade along with side effect.

[mommyjaylon]

ya vondin to is on the national donors list to for bmt but i put it on hold im to afraid to do it and pluss his iron is way to high they wouldnt do it now anyway so i have no idea what will come next you are an insperation to me you want to have a better life and i aplaud you for it i will pray for you every step of the way i will be here 4 you if you need a friend bye

[XXXstranger1980XXX]

hi there...

never mind ,, even if the exjade is not working now ,, it might later,, who knows..

moreover,, am sure scientist would be working on another medication that will work better..

let just be positive..

yea i have been on blood transfusion since i was 2 months old.and it is every 3-4 weeks.

BMT is my only chance and am waiting for a donor,an international research is going on for that.see am not afraid of death but so greedy for a normal healthy life.want to life like everyone else

[mommyjaylon]

ya i dont think he will be able to use exjade evr he gets too many side affects that dont go away its bad so we are stuck for now with desferal you are a courages person and i thank you for talking to me i will pray for you always what is your name my sons name with thalessemia is vondin and my sons name with sickle cell is jaylon and yes we will continue to use the emla have you beeen on transfusions all your life just curiouse well hope to hear from you soon muahhh and hang in there

[mommyjaylon]

hi yes we use emla all the time but it just dosent seem to work any more he takes the desferal in the day time he does pretty good he dont like it at night hmmm what does a two year old like lol but he has a big problem with iron so the desferal is not working with him so i dont know what they are going to do but listen you know doin the bmt is not a great idea at that age or with thal major its better to do these things than have the bmt take your life please rethink keep me posted i will pray

[XXXstranger1980XXX]

emla will help him not to feel the pain of the brick of the injection, do u put desf at night.cus it is the best as he will be sleep and the des will be over when he wake up.

am in germany and going to do the BMT,my parent like all parents are not happy of what am doing, but this is the only way i can get ride off thalsemia, i want to have a normal life,i know it is dangerous procedure esp at age of 27,but i will go for it

ur kid is still young and he will have a good chance,

never give up..

[XXXstranger1980XXX]

hey..

am sorry to hear about ur son not getting on well with the exjade ...

let me tell the next morning after i had my first exjade i had a swollen in my face and was scared to death that this might meant that am going back to desf,, but doc told me to stop the exjade for two day and start again with a decreased amount and it worked the swollen did come back ur kids is still young,,his might be able to stand later after he get abit older meanwhile use the "Emla" cream that will help him not

[mommyjaylon]

hi ok sry about that well my son who is 2 has the thalessemia major and has been on transfusion therapy since 8 months old and yes we tyied the exjade but he got very ill with it he was on it for about 6 months and then he had to start desferal hes been on it for 8 months now its horrible it works off an on i my other concern is the bone marrow trans i did alot of research and im not a big fan of it for the thal patients i lost a couple friends due to that and they were thal patients......