Thalassemia patient from Philippines

Hi. I'm Zai. I am 21. I am a newly diagnosed thalassemia case. I just found out about this illness two months ago. I am a newly registered nurse here in the Philippines. It's quite frustrating for me to know that I have such disease. I thought after I graduated, I could be the one to take over my family's financial needs. However, after only few months of practicing my profession, I was diagnosed with thalassemia.
     I have always been sickly since I wa a child, which is one reason why I have ventured into nursing. I have undergone multiple blood transfusions since I was five. Throughout my 21 years of existence, every doctor I've seen thought that it's a simple Iron deficiency anemia and so every doctor advised me to take iron supplements, and to count that, I have been taking iron supplements for 16 years  only to know that iron is contraindicated for cases of thalassemia. I had my serum iron checked recently and it revealed abnormally high value which caused affectation of my liver and spleen. And lately, I'm experiencing frequent palpitations and irregular menstruations. I was advised to take oral therapy to reduce the excessive iron in my body, (EXJADE). However, it is too costly here in my country. My doctor said I am in need of the therapy immediately,to avoid complications of other organs. but to this day, I am still searching for ways to gather resources so I can afford to have my therapy. The only weapon I am holding for now are prayers and hope that I will be able to live a few more years to fulfill my dreams for my family. 

Hello Zai!

Welcome to the site!

Can you be more specific about the transfusions that you had undergone? Did you have transfusions on a regular interval or just when you found out that your blood counts were low? Normally kids with Thal. Major don't pull through five years without transfusion and since you did then I doubt you have Thal. Major. It is likely that you have Thal. Intermedia or a sever form of Thal. Minor that has been recently diagnosed.

Please keep your blood counts in check and try to lower the excess Iron by chelation therapy such as Desferal or Exjade to prevent organ damage.

Take care, Peace!

Hello Zai,

Welcome to the site. I know it is tough to be diagonised with something you have never heard of but it is better to learn of it and get it treated rather than it taking its toll.

Throughout my 21 years of existence, every doctor I've seen thought that it's a simple Iron deficiency anemia and so every doctor advised me to take iron supplements, and to count that, I have been taking iron supplements for 16 years  only to know that iron is contraindicated for cases of thalassemia

This is a classic example of Ignorance of Thalassemia even when there are millions of Thal carriers in this world. Every one should make sure proper testing is done for their Thal status. Just CBC does NOT help. Hemoglobin Electrophoresis might give a clear picture, but Iron studies is as important along with it.


Zai --> Are you Thal(Minor) or Thal(Intermedia)? What is your Iron levels?
-Narendra

Hi Zai
Welcome to the site. Don't get frustrated because better late than never. Most of the thal knew about their illness by coincedence. Anyway i am sure you will like it here and please feel free to ask anything
Manal

HI1 Thanks for your reply. anyway my doctor's diagnosis with my case is Thalassemia Minor. Mine was diagnosed only recently because it is a rare illness here and I actuially had a difficulty finding a hematologidt to heed my health needs that is why it took a long time for me to be diagnosed. I was actually advised to undergo iron chelation therapy, however, its too costly and I'm having a hard time finding means for this therapy . Anyway, my Iron level, taken in December is 1, 783.
thanks for your replies.   [/color][/color]

Hi Zai!    Welcome to the group!  Glad to have you here with us.   

Congratulations on your accomplishment.  I know that it's hard to have Thalassemia, but if you keep up on your health, you will live MUCH longer than only a few years, so keep striving for what you want and go for it! 

If you have any questions, or need to talk, we are always here.   

Hello Zai,

It is good to know that you finally know what is going on. I am glad you have sorted out what really your body has and I am very sad and feel angry that because of the Ignorance of the doctor's you had to take Iron supplements which increased your Iron level.

Throughout my 21 years of existence, every doctor I've seen thought that it's a simple Iron deficiency anemia and so every doctor advised me to take iron supplements, and to count that, I have been taking iron supplements for 16 years  only to know that iron is contraindicated for cases of thalassemia. I had my serum iron checked recently and it revealed abnormally high value which caused affectation of my liver and spleen. And lately, I'm experiencing frequent palpitations and irregular menstruations.

Members --> Please try to get the Right diagonosis done for yourself. Try to learn as much as you can, so that the Ignorance does NOT hurt you and your health.

It's quite frustrating for me to know that I have such disease. I thought after I graduated, I could be the one to take over my family's financial needs. However, after only few months of practicing my profession, I was diagnosed with thalassemia.

You are still on the way to helping out your family. You dO NOT have any major problem. Now, you just have to take care of yourself and you will be fine. Thal(Minor) is a NOT as bad as Thal(Major) or Thal(Intermedia), so breath a sigh of relief and take it easy.

I was advised to take oral therapy to reduce the excessive iron in my body, (EXJADE). However, it is too costly here in my country. My doctor said I am in need of the therapy immediately,to avoid complications of other organs. but to this day, I am still searching for ways to gather resources so I can afford to have my therapy.

Zai -> The doctors are right by mentioning you need to do Iron Chelation(Removing excess Iron from your body). You can ask questions on Iron Chelation here as lot of our members here have experience with it. There are 3 Iron Chelators in the market - Desferal(Injections), Kelfer(L1) and Exjade. Kelfer and Exjade are Oral medicine while Desferal is sub cutaneuous injection. 

Good Luck with your Chelation

Hi!

I just wanna know if Exjade and Desferal will produce the same effect?

And which takes faster reduction of iron?

how many times will I have to undergo Iron chelation therapy in my lifetime?

Welcome to the Site!    you will learn a lot in this group! that happened to me too when we were  there in Manila, my pedia gave us tons of Iron and mis diagnosed us!  but when we came here in Davao dr. dela Cruz diagnosed us as thal major patient, and our life has changed since then......... Goodluck! hope you find the most suitable chelating agent for you! you're not having BT? if you are how often is it?

Hi. I'm Zai. I am 21. I am a newly diagnosed thalassemia case. I just found out about this illness two months ago. I am a newly registered nurse here in the Philippines. It's quite frustrating for me to know that I have such disease. I thought after I graduated, I could be the one to take over my family's financial needs. However, after only few months of practicing my profession, I was diagnosed with thalassemia.
     I have always been sickly since I wa a child, which is one reason why I have ventured into nursing. I have undergone multiple blood transfusions since I was five. Throughout my 21 years of existence, every doctor I've seen thought that it's a simple Iron deficiency anemia and so every doctor advised me to take iron supplements, and to count that, I have been taking iron supplements for 16 years  only to know that iron is contraindicated for cases of thalassemia. I had my serum iron checked recently and it revealed abnormally high value which caused affectation of my liver and spleen. And lately, I'm experiencing frequent palpitations and irregular menstruations. I was advised to take oral therapy to reduce the excessive iron in my body, (EXJADE). However, it is too costly here in my country. My doctor said I am in need of the therapy immediately,to avoid complications of other organs. but to this day, I am still searching for ways to gather resources so I can afford to have my therapy. The only weapon I am holding for now are prayers and hope that I will be able to live a few more years to fulfill my dreams for my family. 

Ey Zai welcome to the site!  Lyanne and I are from the Philippines too.  Lyanne is a confirmed Thal Major.  As for me I am still in the hanging bridge whether I am Intermedia, Major or, Minor.  Anyway, I'm a pregnant Thalassemia patient so that makes a lot of difference with my work ups now.

Well, I know medications and tratment is really expensive in the Philippines and we often suffer the misdiagnosis here.  I am actually doing my own research and I discovered that there is only a case of 1 Thalassemia patient out of 50 anemia patients in the Philippines that's why our condition is often mistaken as Anemia. 

I'm currently based in Manila.  Lyanne is based in Davao.  Where are you based?

Hello everyone! 

Hi Lyanne! Are you still in Manila or you are back in Davao already?

Anyway, I just want to share to everyone! I am also suffering that tons of Iron thing now.  My OB-gyne made me drink it 3x a day which contracdicted my hema who only prescribed it once a day.  It's just a good thing that I have a baby inside consuming everything for me.  I am waiting for my upcoming blood transfusion this 30th of March.  I hope they test my SF level that time, the suspense is killing me.  I have 7 weeks more for the baby and I'm  beginning to feel some pain in my upper abdomen, left and right side.  I no longer know if that's my spleen or liver reacting. Anyway, please keep praying for me and my baby, I discovered that I have a faster bleeding time and a longer clotting time.  My OB-gyne said that it's not good cause I am prone to hemmorrhaging.