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.