Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: alnahrahmea on March 12, 2007, 11:32:34 AM

Title: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 12, 2007, 11:32:34 AM
Hello everyone I am new here!

I was discovered with the genetic blood disorder Thalassemia when I was 20 years old.

I am 24 now and I am 31 weeks pregnant.  I am still under treatment with my Thalassemia and I've been through a lot of precautionary procedures for the baby and me,  but I am grateful that I have a healthy baby boy who will be named Nathan (meaning Gift from God) who is due May 16, 2007. 

On the 30th of this month I will be having another blood transfusion to suffice for my and the baby's growing need of hemoglobin, and I will be having another transfusion prior to his delivery.

My doctor told me that my pregnancy complications may come when I give birth, so I was advised to take the option with the least possible bleeding. So, I am hoping to have a safe Cesarian section delivery this May. I need all your prayers. I want to see my baby grow. :smile
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: sydneygirl on March 12, 2007, 11:40:47 AM
Hi & welcome to the site!
I hope all is well for you & your baby,take care.
May i ask do you have thal minor?
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Courtenay1826 on March 12, 2007, 11:36:28 PM
Hello!

My name is Courtenay, and I have two beautiful blessings from God...Karol is 17 mos, and Mychael is 3 mos.  I didn't have any complications with Karol's pregnancy except that my placenta was beginning to calcify causing lower amniotic fluid, and I'm not completely sold that it was caused by my Thal...However during my pregnancy with Mychael, I had a severe hemolytic episode in which my spleen began destroying most of my RBC's, including the healthy ones, and swelled to 19 cms.  I had to be in hospital for 10 days in October, and on very close observation until my delivery, which was scheduled as an early "emergency" cesarean to reduce the amount of my bleeding and risking rupturing my spleen during the stress of natural birth.

The transfusions make you feel a world of better during the pregnancy, and although they had to take my blood 4x a day to monitor the serum ferretin and my blood gases (oxygen levels in your arteries), it was so worth it to meet my little angel.

If you have any other questions, please feel free to PM me or respond.   God bless!

Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 13, 2007, 05:40:27 AM
Hi & welcome to the site!
I hope all is well for you & your baby,take care.
May i ask do you have thal minor?

Hello thanks for the warm welcome!  :smiley

So far everything is going all right for me and the baby.  Managaeable according to the doctor since my baby is a fighter and I have a jovial disposition and a positive outlook in everything no matter how difficult it could be.

Anyway, I think I am Thal Beta Major, it's in both my parents' genes. I was one of the few lucky people in that condition to have a delayed onset.  It just got worse when I grew older but I had quite a normal childhood except that I have a weak immune system and was very prone to sickness.  My baby is lucky though that his dad has healthy genes.  :)
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: §ãJ¡Ð ساجد on March 13, 2007, 06:07:53 AM
Hello everyone I am new here!

I was discovered with the genetic blood disorder Thalassemia when I was 20 years old.

Anyway, I think I am Thal Beta Major, it's in both my parents' genes. I was one of the few lucky people in that condition to have a delayed onset.  It just got worse when I grew older but I had quite a normal childhood except that I have a weak immune system and was very prone to sickness.  My baby is lucky though that his dad has healthy genes.  :)

Hello,

In your first post you said that your Thal. was discovered when you were 20 years old and in your second post you are saying that you have Thal. Major. Well, that can't be correct as Thal. Majors don't survive without blood transfusions since their early childhood. It is most likely that you have Thal. Intermedia that made you survive all these 20 years without blood transfusions. A proper DNA test will confirm this.

Anyway, it's still better to have Thal. Intermedia than Major. After all you pulled out all these years without the suffering of blood transfusions and Desferal. However, now that you are all grown up and the human body tends to get weak with age, your Thal. Intermedia is taking a toll on your body and you are transfusion dependant. So, things are going to be a bit different now. You must keep your blood levels in check and make sure that your Serum Ferritin does not increase too much and cause trouble with your spleen or liver. Ask your doctor about it.

Apart from that, you will have a great happy life if you keep everything in check and enjoy your beautiful gifts from God.

Take care, Peace!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: akka1981 on March 13, 2007, 06:28:39 AM


Wish u all the best for a safe delivery. As Sajid said I think you maybe a thal intermediate. Take care of your health. Your positively thinking and am v gald abt that. 

Dont worry share everthing from with site. We are ur new releations whose there to help u.

Tc.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 13, 2007, 06:41:48 AM
Hello!

My name is Courtenay, and I have two beautiful blessings from God...Karol is 17 mos, and Mychael is 3 mos.  I didn't have any complications with Karol's pregnancy except that my placenta was beginning to calcify causing lower amniotic fluid, and I'm not completely sold that it was caused by my Thal...However during my pregnancy with Mychael, I had a severe hemolytic episode in which my spleen began destroying most of my RBC's, including the healthy ones, and swelled to 19 cms.  I had to be in hospital for 10 days in October, and on very close observation until my delivery, which was scheduled as an early "emergency" cesarean to reduce the amount of my bleeding and risking rupturing my spleen during the stress of natural birth.

The transfusions make you feel a world of better during the pregnancy, and although they had to take my blood 4x a day to monitor the serum ferretin and my blood gases (oxygen levels in your arteries), it was so worth it to meet my little angel.

If you have any other questions, please feel free to PM me or respond.   God bless!



Hi Courtenay, I am Lei! Thanks for your message and it is quite a relief that there is someone who had been through what I am going through.  

Our only difference though is I was a Thal Beta Major.  My serum ferritin level is quite high, I have hypochromic and microcytic hemoglobin, etc. etc. In fact I was undergoing treatment and was giving a good response with how I was being managed. My doctors had considered me one of the few medical miracles with my Thalassemia condition, because I am making good progress compared to my counterparts.  Actually even with my condition, I managed to live a normal life as a professional and a graduate student.  Only that I was strictly advised by my doctor not to get pregnant while on treatment.  

But I was quite hardheaded and went on having a baby.  I don't regret it though since the little man inside my belly is very much a fighter.  I am just thankful that I passed the first two trimesters of my pregnancy smoothly.  I responded well to the management that the doctors are giving me.  My blood is still hemolytic and I still have spleenomegaly but it's manageable according to my doctor, and it is a miracle that my hemoglobin levels stabilized between 7 to 8 grams.  In fact the transfusions are doing me and the baby a lot of good.  I am also under close monitoring by the doctors as of the present.  My doctors are just quite worried with my upcoming delivery though since Thalassemia patients according to them have different responses.  

As of now, we all just pray and hope for more miracles.

 
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 13, 2007, 07:04:58 AM
Hello,

In your first post you said that your Thal. was discovered when you were 20 years old and in your second post you are saying that you have Thal. Major. Well, that can't be correct as Thal. Majors don't survive without blood transfusions since their early childhood. It is most likely that you have Thal. Intermedia that made you survive all these 20 years without blood transfusions. A proper DNA test will confirm this.

Anyway, it's still better to have Thal. Intermedia than Major. After all you pulled out all these years without the suffering of blood transfusions and Desferal. However, now that you are all grown up and the human body tends to get weak with age, your Thal. Intermedia is taking a toll on your body and you are transfusion dependant. So, things are going to be a bit different now. You must keep your blood levels in check and make sure that your Serum Ferritin does not increase too much and cause trouble with your spleen or liver. Ask your doctor about it.

Apart from that, you will have a great happy life if you keep everything in check and enjoy your beautiful gifts from God.

Take care, Peace!

Thanks for the advice.  I'll be checking that with my hematologist.  Maybe they concluded that because I have shown signs and symptoms of Thal Beta Major.  My ferritin level is quite high and i have spleenomegaly, my blood is hypochrmic and microcytic, etc.etc. that was in my latest medical report from my hematologist prior to my pregnancy.  But if I were confirmed in that condition, it must have been really a miracle that I survived 20 years w/out transfusions.   I would really prefer a lesser kind of Thalassemia if ever, since I have a baby inside that may inherit the gene. I still have my fingers crossed and high hopes for the better.   :smiley

Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 13, 2007, 07:33:38 AM

Wish u all the best for a safe delivery. As Sajid said I think you maybe a thal intermediate. Take care of your health. Your positively thinking and am v gald abt that. 

Dont worry share everthing from with site. We are ur new releations whose there to help u.

Tc.

Thanks for the warm welcome....  It is really a relief that there are people around who have the same condition as I have.

My condition is rare in the Philippines that some people looked at me like I am some special kind of weird being because I have Thalassemia.  I am an economist and a college instructor so most of my co-workers are not aware of how my condition is.  In fact there was even a time in work that I was treated like I already have lukemia and was discriminated because of it. When I am asked about it people would always give me that "what is that" kind of stare.

I also feel that kind of wondering look whenever I go to my doctor and people ask what is my medical condition why am I visiting a hematologist.  In fact most of the patiens there waiting are usually sick of lukemia or just plain anemia, so whenever I tell them I am also there because I have Thalassemia I am often confronted with raised eyebrows with the questioning look in their eyes.

In fact my parents wouldn't believe the doctors of my condition at first that they decided to have a 2nd and 3rd opinion.  All three doctors have the same conclusions,  but they each have different approaches.  My first doctor placed me in iron treatment which raised my ferritin levels to three times the normal level.  The next doctor placed me in folic acid treatments and regular blood transfusions which is quite heavy on the financial side since blood is an expensive commodity in the Philippines.  The third doctor was more conservative and she stopped my regular blood transfusions and pllaced me in folic acid and controlled iron medication.  My third doctor always says that if my body can adjust to a 5 or 6 gram hemoglobin level then we can do without transfusion. But my third doctor's attitude changed my outlook about my condition.  Actually she gave me the inertia to have a better and lighter look at my condition.

Even literatures about Thalassemia cases in the Philippines is very limited. That is why I was challenged to know more about my conditions.   I really went out of my way doing research about it which I slowly explained to my family and friends, which actually lessened their fears and qualms about accepting me.

And lastly, having this baby in spite of my condition is my way of telling them that I am only "special" in their eyes, but I am very much a normal being like any normal healthy person. 

At least now I am relieved that there are 10,000 more people around the world who have what I have.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: §ãJ¡Ð ساجد on March 13, 2007, 08:11:25 AM
Hello Lei,

You might want to discuss your high Serum Ferritin level with your doctor. It's not good to have a high SF level as it can damage your organs. Ask your Doctor about Iron Chelation therapy such as Desferal or Exjade. I think they might put you on it after the birth of you baby.

Try to keep your SF lower than 1,000 ng/ml

Take care, Peace!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 13, 2007, 08:35:29 AM
Hello Lei,

You might want to discuss your high Serum Ferritin level with your doctor. It's not good to have a high SF level as it can damage your organs. Ask your Doctor about Iron Chelation therapy such as Desferal or Exjade. I think they might put you on it after the birth of you baby.

Try to keep your SF lower than 1,000 ng/ml

Take care, Peace!

Oh no! Now I'm getting a little scared. Will that affect my baby?  Since he receives whatever I receive.  I mean if my ferritin is high and I am on iron medication will the baby absorb that too?
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: §ãJ¡Ð ساجد on March 13, 2007, 10:15:40 AM
Hi Lei,

No need to worry about high Iron yet. The human Liver can store up to 20 Grams of Iron before it becomes too much for it ans that usually happens if you are on regular monthly transfusions for about 10 years or so. After that point the excess Iron goes to other organs and starts to damage them.

It's hard for Transfusion dependent Thals. to keep the Iron level low and have to be put on chelation therapy. Therefore it is recommended for patients on regular transfusion schedule to keep Iron level lower than 1000 ng/ml because the chelation therapy is slow and most people have compliance problems with it and if SF gets too high it becomes even harder to comply with the treatment.

Your case is quite strange, Iron is never prescribed to Thals. if they already have high SF level. I hope your doctor knows what he is doing by prescribing Iron.

Take care, Peace!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Courtenay1826 on March 13, 2007, 01:30:43 PM
I agree with Sajid on the case of taking iron - it can be very detrimental to a Thal Intermedia or Major...If you have Thal Intermedia and Iron Deficiency Anemia...You might want to see a specialist in a big city to manage your treatment.  Your iron levels should be closely monitored then.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Narendra on March 13, 2007, 03:50:40 PM
Hello alnahrahmea,

Sorry, I did NOT see this thread earlier and posted it with the other post. I am copying it here, so you get an idea with all the other replies. I am also going to delete the other post i wrote, so it does NOT create confusion

Congrats on the baby and we wish you all the luck for a healthy delivery.

Quote from your other post
Quote
In the Philippines Thalassemia is quite rare, so when I was diagnosed to be suffering from it after 3 weeks of hospitalization when I was 20 years old
From what you have written, you are definately NOT a Thalassemia(Major). Thalassemia(Major) patients need to get transfused with blood in their early childhood and cannot survive without it and you made it until 20 years, so it seems more like you have Thalassemia(Intermedia) and you might be able to do well with proper treatment.

Quote from your other post
Quote
My second doctor confirmed my Thalassemia condition which he suspected as Beta Thal Major.  Since I was already suffering from spleenomegaly and very high ferritin levels
You might want to drink more Tea to reduce the Iron absorption by the gut after meals. You high ferritin might also need Iron Chelation Therapy, if goes above managable levels(although your doctor should be able to guide you well).

With the way, you are treated, it is a great frustration. You might want to print out details on Thalassemia and give it to your doctor when you visit them next time, so that they can re-think your Iron Medication.

From:- http://sickle.bwh.harvard.edu/thaliron.html
Quote
Thalassemia and iron metabolism are closely linked. Iron deficiency and mild forms of thalassemia (e.g., thalassemia trait) are often confused. Both are associated with mild to moderate anemia and microcytosis (small red cells). At the other end of the spectrum, severe forms of thalassemia frequently produce iron overload. Excess iron accumulates due to enhanced iron absorption produced by thalassemia, repeated blood transfusions or both

You should find out if you really need to take the Iron. This is needed only in case of actual Iron Deficiency.

Again from the same site:- From:- http://sickle.bwh.harvard.edu/thaliron.html
Quote
Should a person with thalassemia trait avoid iron, such as iron-fortified vitamins?
Iron replacement tablets or iron-supplemented vitamins should be taken only as directed by a physician to treat actual iron deficiency or to prevent iron deficiency in high risk circumstances (e.g., pregnancy). People with thalassemia trait (thalassemia minor) are not per se at greater risk of complications from iron in the diet than anyone else in the general population. There are instances, however, in which coincident conditions can increase the risk of iron overload. For example, people with thalassemia trait who also inherit the gene for hereditary hemochromatosis can accumulate dangerous levels of iron by using dietary iron supplements.


On the positive side, it is good to know what you might be dealing with. Atleast that way, you are armed with the information and decide accordingly. There are quite a few Thalassemia(Intermedia) mom's who have delivered healthy babies. Also, some Thal(Major) moms have their own babies, so you would be fine with proper care. Also, how big is your spleen?

Good Luck with Nathan,
-Narendra
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 15, 2007, 06:11:21 AM
Hi Lei,

No need to worry about high Iron yet. The human Liver can store up to 20 Grams of Iron before it becomes too much for it ans that usually happens if you are on regular monthly transfusions for about 10 years or so. After that point the excess Iron goes to other organs and starts to damage them.

It's hard for Transfusion dependent Thals. to keep the Iron level low and have to be put on chelation therapy. Therefore it is recommended for patients on regular transfusion schedule to keep Iron level lower than 1000 ng/ml because the chelation therapy is slow and most people have compliance problems with it and if SF gets too high it becomes even harder to comply with the treatment.

Your case is quite strange, Iron is never prescribed to Thals. if they already have high SF level. I hope your doctor knows what he is doing by prescribing Iron.

Take care, Peace!

I agree with Sajid on the case of taking iron - it can be very detrimental to a Thal Intermedia or Major...If you have Thal Intermedia and Iron Deficiency Anemia...You might want to see a specialist in a big city to manage your treatment.  Your iron levels should be closely monitored then.

I was told the Iron is for the baby, and my folic acid medication is also doubled.  I just hope they really know what they are doing with me...  :whew
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 15, 2007, 06:45:41 AM
Hello alnahrahmea,

Sorry, I did NOT see this thread earlier and posted it with the other post. I am copying it here, so you get an idea with all the other replies. I am also going to delete the other post i wrote, so it does NOT create confusion

Congrats on the baby and we wish you all the luck for a healthy delivery.

Quote from your other postFrom what you have written, you are definately NOT a Thalassemia(Major). Thalassemia(Major) patients need to get transfused with blood in their early childhood and cannot survive without it and you made it until 20 years, so it seems more like you have Thalassemia(Intermedia) and you might be able to do well with proper treatment.

Quote from your other postYou might want to drink more Tea to reduce the Iron absorption by the gut after meals. You high ferritin might also need Iron Chelation Therapy, if goes above managable levels(although your doctor should be able to guide you well).

With the way, you are treated, it is a great frustration. You might want to print out details on Thalassemia and give it to your doctor when you visit them next time, so that they can re-think your Iron Medication.

From:- http://sickle.bwh.harvard.edu/thaliron.html
You should find out if you really need to take the Iron. This is needed only in case of actual Iron Deficiency.

Again from the same site:- From:- http://sickle.bwh.harvard.edu/thaliron.html

On the positive side, it is good to know what you might be dealing with. Atleast that way, you are armed with the information and decide accordingly. There are quite a few Thalassemia(Intermedia) mom's who have delivered healthy babies. Also, some Thal(Major) moms have their own babies, so you would be fine with proper care. Also, how big is your spleen?

Good Luck with Nathan,
-Narendra

I am not really sure if I am being mismanaged considering their prognosis and treatments, but if they are really making a mistake I just hope I deliver my baby safely and deal with my condition after birth where my baby will not be affected.  My spleen has enlarged around 1/4 more its normal size from the last time they checked it. That was last year December.  I am not sure about it's size now because whenever I go for check-ups they are more concerned about my delivery and the baby. I've got about two months left or 63 more days prior to my  baby's due date, I hope they won't damage any of my organs further if they are really committing any errors.  :dunno

My grandfathers are also doctors (both are surgeons),  but thalassemia is quite new to them as well, so I am left at the mercy of my hematologist. Actually both of them never encountered thalassemia in their practice, only now with me.  :-\

As of recently, all I knew about our family is that anemia has been prevalent in our history. In fact I am beginning to suspect that some of the anemia cases in our family history may have been thalassemia cases only that they were misdiagnosed and mistreated.  In fact I have two great grandaunts who were confirmed to have died of lukemia. My lineage descends from Spanish, and Chinese blood aside from my Filipino blood, maybe that's where the genes came from.  :huh

As of now, I am hoping that the baby comes out well and that I survive and see him grow.  That is all I ask for now.  I am even looking at the possibility that Nathan's chord blood be preserved after his birth just in case.  I wouldn't want him undergoing the same predicament if ever.  :-\

At least your suggestions are giving me ideas on how to question my doctors with whatever they are doing to me. All I hold on to is my faith now. I have hope that all will be for the best and a this is just a test of my faith. 

Thanks!   :whew
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 15, 2007, 07:10:05 AM
Just an additional information though, my blood pressure since I was 4 years old is normally low.  I don't know if that has any relationship with me having Thalassemia.  Actually I am pregnant now but my blood pressure lies 80/40 to 110/70. On the average I have a normal blood pressure of 100/60.

Actually, I am talking to my mom earlier and she told me that when I was a kid I was very sickly.  In fact, I go in and out of the hospital from my first month to my fifth year.  I've been normally pale which she took as something normal 'till I grew up.  My mom even mentioned that I suffered primary complex when I was four.  The sad thing though is none of my doctors then checked my blood.  Not even a single blood test was made.  In fact, the blood test they took 4 years ago was something that they only took out of compliance with hospital rules for patients suffering from extremely high fever (meaning on and off fever above 40 degrees celsius). In fact at first they took that test because they were suspecting I have malaria or dengue.

I just wonder how many more Thalassemia cases like mine that they have here in the Philippines which were never discovered or treated the wrong way.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Andy Battaglia on March 15, 2007, 04:06:57 PM
Hi Lei,

You are almost certainly thalassemia intermedia. By definition you cannot be major as you are not transfusion dependent and that is a requirement to be classified major. Your symptoms do indicate intermedia. From what we have heard from others from the Philippines, mis-diagnosis is common. However, things can always improve and finding doctors willing to learn is important. there is so much information available on the internet and doctors should take advantage of that just as we do.

Low blood pressure is found in thalassemia and one study even showed that carrying the trait actually protects against high BP.

From http://cat.inist.fr/?aModele=afficheN&cpsidt=17488171

Quote
Analysis of blood pressure by gender showed that male BTT subjects had a 10-mmHg lower systolic blood pressure than normal subjects (120.8 mmHg in the case group as compared with 130.7 mmHg in the control group). BTT (β-Thalassemia trait ) has a protective effect on the development of hypertension in young male adults.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 17, 2007, 03:03:33 AM
Hi Lei,

You are almost certainly thalassemia intermedia. By definition you cannot be major as you are not transfusion dependent and that is a requirement to be classified major. Your symptoms do indicate intermedia. From what we have heard from others from the Philippines, mis-diagnosis is common. However, things can always improve and finding doctors willing to learn is important. there is so much information available on the internet and doctors should take advantage of that just as we do.

Low blood pressure is found in thalassemia and one study even showed that carrying the trait actually protects against high BP.

From http://cat.inist.fr/?aModele=afficheN&cpsidt=17488171


Thanks Andy and everyone who replied earlier!

At least now I am armed with a lot of information that I can ask my doctor or question whatever is it that they are going to do.

The sad thing now is that I have more questions to ask my doctor as compared to before.  I just hope they settle their prognosis if they misdiagnosed me so I that get the proper and right treatment.  I'm just worried of my baby being affected now if I undergo more tests at this point.  Actually, at this stage it is harder for me because the baby is a little heavier and I am really very careful not to have premature labor.

I just hope a foundation will be put up in the Philippines that would really help out Thalassemia patients like me.  In fact, even if I am quite suffering from a misdiagnosis, I am still lucky because my family can afford my medications and management.  There are some Thalassemia cases who just end up being neglected because first the disease is often mistaken as anemia or some really just can't afford the treatment.

I'll be updating the group about my and my baby's condition.  As of now I am preparing for the blood transfusion scheduled on the 30th that my baby and I need.

Again thank you to all of you!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Lyanne on March 17, 2007, 04:10:22 AM
Hi there!  :wave i'm also from the Philippines and I do believe there is a foundation for thal patients, if we have here in Davao there's also one in your place that's for sure, just ask your hematologist, who is your doctor anyway? and where are you from the Philippines?
I also wanted to welcome you here! this is the best place to go to if you can't find a local group in your place. I'm glad :grouphug to know another patient from the Philippines, hope to stay in touch with you!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 17, 2007, 04:40:40 AM
Hi there!  :wave i'm also from the Philippines and I do believe there is a foundation for thal patients, if we have here in Davao there's also one in your place that's for sure, just ask your hematologist, who is your doctor anyway? and where are you from the Philippines?
I also wanted to welcome you here! this is the best place to go to if you can't find a local group in your place. I'm glad :grouphug to know another patient from the Philippines, hope to stay in touch with you!

Hi Lyanne,

It is good to hear that!  :whew :smiley
 
Anyway, I am based in Cagayan Valley, but I am here in Metro Manila right now because my baby is due this May.  I am currently being managed by Dr. Luz Alisangco-Gamez of the University of Santo Thomas Hospital in Manila.  Previously I was managed by Dr. Enrico Tuy of FEU-NRMF Hospital, and prior to that I was managed by another family doctor who is not a specialist.  Can you recommend any other doctors?  I don't know but I'm planning to consult for a 4th doctor's opinion after giving birth if necessary.

Thanks!

Lei
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Lyanne on March 17, 2007, 05:02:13 AM
Hi there! I can't recommend a doctor but I'm handled by Dr. Lilian Yu a hematologist, here in Davao, but i know there's a lot of hematologist in Manila. Is your current physician a hematoligist? keep us updated on your situation! Take Care!
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 17, 2007, 05:41:34 AM
Hi there! I can't recommend a doctor but I'm handled by Dr. Lilian Yu a hematologist, here in Davao, but i know there's a lot of hematologist in Manila. Is your current physician a hematoligist? keep us updated on your situation! Take Care!

Yes Dr. Gamez is a specialist in hematology.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: Danielle on March 23, 2007, 06:29:18 AM
Hi Lei!  Welcome to the group! Glad to have you here.  You will find some of the best information right here in this forum by talking to these wonderful people.  :happyyes

Make yourself at home.   :hugfriend
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on March 23, 2007, 09:10:27 AM
Hi Lei!  Welcome to the group! Glad to have you here.  You will find some of the best information right here in this forum by talking to these wonderful people.  :happyyes

Make yourself at home.   :hugfriend

Hello Danielle!  Thanks for the warm welcome and yes I am learning a lot from them!   :wink
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: mommyjanice on July 06, 2010, 02:45:51 AM
Hi,

i'm also new here.. because of constant searching regarding the condition of my son, i saw this forum..

my baby is only nine months old now.

our dilemna started when he was 2 months old..our pedia who administered vaccine to him noticed her pale color that's why he added iron supplement to his daily vitamins..she said it will only last for 2-4 months.

Since then, he always have on-off fever.i remember it almost happen every month. when he was 3 months old, he was admiited for 3 days in the hospital because of high fever ( 40+degrees) but they said its only viral. but the CBC shows lower RBC, MCV than the average. So my pedia increase the iron intake for 3 times a day..

until last month, he had again fever for almost 1 week...So my pedia requested us to do the peripheral, retics count and CBC..the result shows again a low MCV and RBC and some questionable shapes of the cells.

We were recommended to see a hematologist. just the mere sight of hematologist picture brings trigger to my spine. I'm very afraid..

when we met the hematologist, she said she suspected that my baby has thalassemia.. At first, i was relieved knowing that this is not a leukemia or what. Honestly, it's my first time to hear this kind of disease. The Dr explained to me that this is heridetary, usually in my side. she asked me if we have it in our family..my mother told me that my great grand mother died of apalstic anemia at the age of 65.. other than that, we don't know heard any case in our family ...

this morning, he have hemoglobin electrophoresis to confirm if this is really thalassemia or what..We will know the result on Friday, July 9, 2010.

Aside from continous paling of color and low RBC, he don't have any symptoms.. He is active baby so far..

I was also a healthy woman eversince..

hope this site will help me, will enlighnten me, and will support me all throughout..

thank you and godbless

Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: alnahrahmea on December 04, 2010, 01:08:49 PM
Hi Janice!

I hope all is well with your baby now.  I'm sorry I only got on-line now.  Just feel free to private message me anytime.

God Bless you and Take Care...

Always,

Lei


Hi,

i'm also new here.. because of constant searching regarding the condition of my son, i saw this forum..

my baby is only nine months old now.

our dilemna started when he was 2 months old..our pedia who administered vaccine to him noticed her pale color that's why he added iron supplement to his daily vitamins..she said it will only last for 2-4 months.

Since then, he always have on-off fever.i remember it almost happen every month. when he was 3 months old, he was admiited for 3 days in the hospital because of high fever ( 40+degrees) but they said its only viral. but the CBC shows lower RBC, MCV than the average. So my pedia increase the iron intake for 3 times a day..

until last month, he had again fever for almost 1 week...So my pedia requested us to do the peripheral, retics count and CBC..the result shows again a low MCV and RBC and some questionable shapes of the cells.

We were recommended to see a hematologist. just the mere sight of hematologist picture brings trigger to my spine. I'm very afraid..

when we met the hematologist, she said she suspected that my baby has thalassemia.. At first, i was relieved knowing that this is not a leukemia or what. Honestly, it's my first time to hear this kind of disease. The Dr explained to me that this is heridetary, usually in my side. she asked me if we have it in our family..my mother told me that my great grand mother died of apalstic anemia at the age of 65.. other than that, we don't know heard any case in our family ...

this morning, he have hemoglobin electrophoresis to confirm if this is really thalassemia or what..We will know the result on Friday, July 9, 2010.

Aside from continous paling of color and low RBC, he don't have any symptoms.. He is active baby so far..

I was also a healthy woman eversince..

hope this site will help me, will enlighnten me, and will support me all throughout..

thank you and godbless


Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: zyerg on June 29, 2012, 08:37:40 PM
Hi, MommyJanice,

It's been 2 years since your last posted date.  I am a newbie here and my son is suspected to have Thalassemia.  You are from Metro Manila and I wanted to ask how was your daughter doing?  And also, can you give me the hospital and/or doctor who handle your daughter's case?

Thank you and looking forward for your reply.
Title: Re: THALASSEMIA MOM FROM THE PHILIPPINES!
Post by: letter_vee on September 15, 2012, 11:06:25 AM
Hi, MommyJanice,

It's been 2 years since your last posted date.  I am a newbie here and my son is suspected to have Thalassemia.  You are from Metro Manila and I wanted to ask how was your daughter doing?  And also, can you give me the hospital and/or doctor who handle your daughter's case?

Thank you and looking forward for your reply.


Maam I was diagnosed with Thal. Minor way back 2000 at Children's Medical Center. .. my pediatrician back then was Dr. De castro I think? I could not remember surely but I think he's the one. ..

I hope your son is all well and I hope you find your questions answered.