Just starting to face the world with thalassemia...

As a child, I already observed that I am different. Compared with my classmates, I am smaller than them, I am moody than them, I am weak than them, I am pale (in color) than them. But as the saying goes, I am what I am… I tend not to ask my parents about my incomparable differences ‘cause I thought that this will cause no harm on my part…
 
Years had passed… I finished by elementary years, my secondary years and eventually by college years with flying colors. With all my inconsistencies, I pursue my studies. And now, I am starting to build my own life and career when suddenly, an unknown visitor knocked on my door. An illness/disease/disorder...
 
I was being transfused with bags of blood (October 2008), without even knowing the nature of my disorder. I was transferred from one doctor to another, still not resolving the disorder. Eventually, a doctor from a private hospital in Cavite led to the discovery of my disorder (December 2008).
 
It was βeta-Thalassemia… From then on, I am being transfused with blood every three months.

I was not surprised of the result because when I was in 2nd year college, a doctor told me that I might probably be suffering from that disorder.  But that time, I didn’t care much about it. I focused more on my studies. And also, for the thinking that this disorder can be cured easily with medicine, just like a simple fever.

Before, doctors told me to take Iron supplements for the think that my illness is just Iron Deficiency. Just to found out that my Iron level exceeds much higher than normal. Now that I know that it’s not just simple Iron Deficiency, I trained my self to avoid foods with Iron.

My doctor told me that a person with this disorder tends to live longer, if treated well. Of course, I know that because I will not probably be here to share my story if that does not happen. As per doctor, I am already suffering from this disease since birth.
 
I am living a life for more than 20 years. There’s so much to be thankful for. Even this sickness that strike my life. Without it, I will not probably meet different persons from different walks of life who will help me through this battle.
 
This is not the end for me. It’s just a new start. A new adventure. New things must be learned along the way.
 
I know, I still have a great role to play in this game called LIFE.
 
 
 
 
 

Hi Jennilyn Diloy  ,
 ,
How r  u ? i hope that you'll b fine and feeling as good as we r to have u here ...
i hope that you'll find this forum usefull .. so keep posting , stay in-touch and asking n sharing wat-ever u wana talk abt ...

Best Regards
Take Care
Umair

Hi Jennilyn,

I really love the way you described everything,you are right,thats not the end,thats just a new beginning,you sound like a beta thalassemia intermedia to me,try to read through our Thalassemia Intermedia section,it will help you a lot,the more knowledge you get,living with this disorder would be more easy.

Good luck 

Zaini.

Hi Jennilyn

Welcome on board.  As Zaini said you do seem to have thalassemia intermedia.  And definitely read through the intermedia section to get to know how you can improve your everyday life.  There will be supplements which have improved the quality of life of so many people posted in there.  Since you have started transfusion you should also read about chelation, when to start and how to go about it. 

quote:
"My doctor told me that a person with this disorder tends to live longer, if treated well".
Your doctor is absolutely right and the condition is to stick to regular chelation if you transfuse regularly.

You will have so many people willing to help you here with your queries.  Do not hesitate to ask questions and to share whatever you want.

Take care
Jade

Hi Jen,

I would like to welcome you, you are in the right company.

I'm   55yrs old and I have thal intermedia  plus other health issues, I've raised four sons , Acheived academically ,had a few professions and maintained one of them for twenty-eight years and I'm still kicking,

Admittedly for the past five years my health gave me cause, to take it easy, I chose to concentrate on myself, taking care of my health .which includes, having adequate rest,   eating a proper fat free,sugar free , a well balance diet ,
and taking the right and acurate dose or prescribed medications and regular non strenuous  exercise.Of course regular visits to my doctor  how can I miss my social life    "visiting the doctor"

Its not easy, but can be achieved with perseverance
Having said all the above ,I would conclude that there is no guarantee  in life, WE all just play the card we are dealt with and make the most of it.

My fevorite saying is "life is not the way is suppose to be, it is what is, The way we cope with it is what makes the difference"

I hope you find comfort and moral support from our website and keep learning because knowledge is Bliss

Forgot to tell    I'm the clown
sincerely  Kathy

Thanks for the advice. Being a memeber of this group means a lot to me..

Can I ask a few questions???

I haven't been tranfused by blood for about 5 months. Before, I was transfused every 3 months. Will there be a bad effect on me, for that case?

Hi Jennilyn,

The frequency of transfusion should be related to your hemoglobin level. What is your Hb level and why has the frequency changed?

Welcome to the site! Jen. I'm sure glad you've come to the right place.

As for my HgB level, it ranged from 82 to 86 before. Supposed to be, I should have my transfusion last June, but my HgB level became 94. I know that still, it's not within the normal range. But my doctor said that it's okay not to have transfusion if HgB is within 90 and above.

Hi Jen,

As long as your Hb stays above 9 you do not need transfusions. You can help yourself with proper supplements like folic acid and B complex and you might also want to consider taking wheatgrass supplements in some form, as they do help keep the Hb up in many people.