Hello everyone.

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Offline letter_vee

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Hello everyone.
« on: September 15, 2012, 11:00:50 AM »
I just joined in a couple of days ago. Uhm I have been diagnosed with Thal Minor back when I was 10 and that was my first and only check up since then. From that meet I was given 800mcg of Folic Acid to take, eat green vegetables and protect my spleen as it has grown. As a child growing up with Thal it is hard having yellow skin and sometimes in the eyes (but now it has become more evident), also talking about being bullied and called by so many names Golden Gate, or someone having with Hepatitis. Also I did not quite have the playtime normal kids should have since I had to be careful with my spleen, choosing friends as well luckily I was able to find good ones who supports.

I just turned 22 last August 10 and just graduated College with a degree in Physical Therapy. How ironic coz' I don't know a thing about my own management that is why when I had my internship at Cebu City, our Dean urged me to seek consultation with her hematologist friend and so I did. From that meet she raised up my Folic Acid dose to 5mg and I should have had a follow up but I had to return back to my home city so i was not able to.

here are my concerns:

#1 Should our diet as (Thal px's) be based solely on vegetables? because i'm concern with eating meat and it may cause with the iron overloading that I've read about but i'm not saying that it will or will it?

#2 I've experienced chest pains since 2007 about 2 attacks per year as i've observed my last one was on April 2011 right before I had my internship and was checked our but they said that my heart was good and somehow the attacks were heart burn and i was given a med for that. so far I have not had any since then. But does this relate to iron overloading? coz' i read that most die in heart attacks. ..

#3 What can we do to lessen the yellowing of the skin and eyes? please it is my number one concern PRACTICALLY.

#4 I wanna be upfront about death and all, but with my case can someone please tell me what are the chances of survival with people like me who only has Folic acid and proper dieting(supposedly) as their management can last? I know it's a shame coming out as a student of medicine but i really have no idea what else to do here and I understand my parents I know they are trying they're best I mean they're the  parents who would give just for their kids to survive but unfortunately we don't have the finanancial matters so I understand them but I just really wanna know. Ever since I was dx I was always thought i'd die about 24 but i'm trying my best not to as well, as they it's just mind over matter.



Thank you and God bless to us all, Hugs to everyone from the philippines

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Offline Andy Battaglia

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Re: Hello everyone.
« Reply #1 on: September 15, 2012, 05:16:29 PM »
Hi letter_vee,

First thing, don't worry too much. Thal minor is not a fatal condition and minors live normal lifespans.

1) A healthy diet is important, as thal minor will deplete many vitamins and minerals. A diet high in fresh fruit and vegetables is important, but that doesn't mean you can't eat other foods. If your hemoglobin level is low, your body will absorb excess iron from your gut, but for thal minors, this is normally not a problem unless their Hb level is quite low, <9. Moderation in consumption of red meat should be observed, but in general what is important is a nutritious diet, low in processed and junk foods.
2)It's difficult to say that your chest pains were heart related. If you ever experience heart palpitations or irregular heartbeat, a supplement containing both calcium and magnesium should be taken daily, as these minerals control the two sides of a heartbeat and they need to be kept in balance.
3) Yellow skin and eyes is a result of excess bilirubin being produced. This is a result of the breakdown of red blood cells that occurs in all forms of thalassemia. The best thing you can do to help with this is to follow a good diet. You can also try B complex and magnesium supplements, as they can help the RBCs to last longer. Staying well hydrated is also quite important.
4) Thal minor may cause symptoms. but it will not kill you. My advice is concentrate on diet and exercise. Proceed as though you have little margin of error concerning your diet and look at what you consume and make sure it is nutritious food. Read through our section on Diet, Nutrition and Supplements for more ideas on how to be healthier as a thal minor.
Andy

All we are saying is give thals a chance.

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Offline letter_vee

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Re: Hello everyone.
« Reply #2 on: September 20, 2012, 09:41:39 AM »
Thank you very much @Andy :) you was very helpful. Yeah, i was told the same thing on not worrying too much :) Thank you thank you. .. yeah I'm making my own exercise program now :)

thanks and i'll surely keep in touch with you guys. God bless and take care (all) :)

 

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