Hello to all and a bigger hello to Red,
Sorry for my late response but I guess better late than never.
I'm a 39 yr old thal major female. My parents were told (like many others) that I would not live past my teens.
they got that wrong.
I was told that i would not have children.....
they got that wrong also
The first thing we have to learn is to not class thalassaemia as a disease because its NOT. We have to learn to call it a disorder as it is. Thalassaemia is basically a spelling mistake in our DNA.
We are all blessed, we are able to walk, talk, see, touch, smell, we can admire the colors of the summer sky, we can feel the rain in the winter months, we can smell the flowers in spring and watch the leaves fall in Autumn. We basically groom ourselves on the outside such as brush our teeth, brush our hair, sit in the sun to have a bronze glow, rug up in winter to not catch a cold. We do our chelation therapy to maintain our inner health.
You might be saying yeah well it's hard, trust me I know things are hard for many patients on this forum that live in countries that don't have the proper care, that don't get desferal, that have to travel many of miles to get to their transfusion centres and perhaps don't even get fresh blood, I have been overseas and seen it first hand and told many many stoires. I have also had the heartbreak of loosing many friends in my home country and also overseas.
HOWEVER, we have to make the most of what we have and NOW! Things have changed over the years as I have grown older with thal, things are changing for the better. We all have to remember that and not loose sight.
Growing old should be a welcoming thing for many of us, as we can turn and say I'm proud to be 22, 45, 50 and even 65 why? Because you have joined the wider community, you are normal, you contribute to your community, just with a slight CONDITION called Thalassaemia. I am as I said 39 yrs old. I'm blessed to have made it, I count my blessing and i am looking forward to turning 50. I want to be one of the older thalassaemic patients I want to experience the ageing conditions that the rest of my community live with, I want to see my child become a parent (if he is blessed) I want to see granchildren. I want to grow old with thalassaemia.
At the age of 16 I said the words "why me?" my mother said "there is nothing wrong with you" its harsh i know but (long story behind it, I have posted it on the forum in previous posts) she didn't cotton wool me, i had to work after school, i had to catch public transport and do and fend for myself. Why? Because I was normal like my cousins and friends. Why should I be treated any differently?
I have been dealt with alot in life , alot of life experiences like others on this forum, i know i am not alone. I became a widow at 38, my child was unwell at birth (now is very healthy) my husband was ill for many years, yet not once did i even say why, why is all this happening to me? I have thal and I have to deal with all this shit (excuse my expression) but thats how it is.
Life is what we make of it , the world is our oyster, you have to take things at every chance u are given and never loose sight of who or what you are. I do agree that having thal major has made me a stronger person , being able to accept things for how they are not what they are. Being stuborn is great, its charector building. I personally wouldnt change a thing.
I love my thalasaemic life, I love life!
Miaki xx