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You are here : home > Child's Healthcare > Childhood illnesses and medical conditions > Thalassemia > Comments

Comments:

Name:
Country: India
 I am a lady of 27 & having heterozygous state of beta thallassemia [Hb A-93.2%,Hb A2-4.9%,HbF-1.9%,Hb S,D,C are absent],If I marry a person having HbE-TRAIT with-[hbA-70.7%,hb A2+E-28.8%,hbF-0.7%,& Hb S,D,C are absent] what are the chances of having a thallassemic child and how to prevent it? waiting for early responces..
Name: NABAMITA DEY
Country: India
 I AM 28 F AND BETA THALASAMIA TRAIT PATIENT AND MY HBA- 82.3%, HBA2-6.2% AND HBF-3.7%. I WANTED TO KNOW IT IS VERY SERIOUS OR NOT FOR LONG LIFE
Name: raju
Country: India
 i am a thalassemia carrier and i am going to test my partners blood before marriage.please tell me the conditions to get a normal baby.please if someone can help me to know this as early as possible.
Name: raju
Country: India
 i am a thalassemia carrier and i am going to test my partners blood before marriage.please tell me the conditions to get a normal baby.
Name: Asyraf
Country: Malaysia
 imma very skinnny boy and im living on with it so i need someone to help me with thiss!!! im 15years old and not fat ;[
Name: ahmad
Country: Jordan
 hi all im hapy for this site its make me give up of my sad . im 25 its the same for me and my wife we have minor although we still have no baby and i dont know is our merge true or a mistake coz we live in stress but we love each other about 9 years ago so i really want my waif to get preg but we really afraid to get a baby with major thala so i will ask god always to give us a one baby without any thala rate. ameen
Name: Mary Ann
Country: U.S.A.
 hi guys,, im so glad to fined this site,very impormative and challenging..im 22 years old i came from philippines and moving here in us.i dont know i have a beta thassemia until my first pregnancy blood test..to know you have a thassemia during your pregnant is very stressful..i reseach all day about thalassemia..then i found this site..so i feel better now..my doktor told to my husband to get a blood test to yesterday my doktor called him and tell the good news he is negative to thalessemia..im so confuse because since my childhood i cant feel any symtoms of this cases..i live normal in my 22 years in my life im valleyball player in my school and im a runner too..so i cant believe i have that..i called my doctor again and a told him i cant feel any symtoms of this..so he said it is only 10 percent..and im so happy to know that..so..i want to say to all have this cases and single dont be afraid to get marrioed and having a child..life is not perfect but you can enjoy it.think positive and remember you not only one in this world.many people than us suffered in their lives!!god bless to all and good luck
Name: sana
Country: Pakistan
 its gud that all persons share their life.for thal.there is nothing to worry about but take care of your health and especially the one who is patient consult and talk to ur doctor.god is our father pray to him and share everything with him.
Name: natalie B
Country: Jamaica
 i am 39 yrs old, my mom is of chinese origin- trait advised since 7 although i don't know the exact one. hematologists here seem to think its only an academic exercise & waste to determine that.so my parents dismissed it. its just since i had kids that the anemia source was identified again as the trait. nevertheless-today i am in bed feeling lifeless in my legs and arm muscles, feeling like i'm lacking oxygen, difficult to walk-1st time ever. this is the worst its gotten. i always get dizzy, faint feeling when i'm under prolonged stress,or get up suddenly if laying down. have limited endurance but i push myself. the body takes care of itself amazingly -always craves red meat for protein/iron and cheese which is salty to increase blood pressure.my typical adult life -i have low blood pressure 110/70, when i feel dizzy its usually at 90/50, hb on avg 9 even with prolonged treatment,when dizzy it is at 8.8, mildly jaundiced,murmur in the heart, abnormal tear drop shaped blood cells which causes the mild jaundicing.i am slender sz6 -i have 2 kids healthy no trait passed on. dr took me off iron when they discovered the trait when i became an adult-ferritin stores overload 657 s/be 120 max. as a child anemic, tire easily and got leg cramps very frequently. other than i am healthy, vivacious, good in spirit. i am quieted to know now with this site that i am not alone or going off my bonkers feeling this twice a year. severe lethargy,fatigue and light headedeness episodes. my only concern is this dead weight legs today -i've been feeling fatigued for past 2 weeks. sleep for 10hrs and wake up still feeling tired in my musceles/bones. seems to have culiminated today. going to get specific trait i'd now that i know lots of people are like me out there.
Name: worried
Country: U.S.A.
 today 2009-09-10 i got a call from the gyno and she said that the mother (3 month preg) is thal and took my blood samples. i am into my tears after reading about this disease. i am now worried about the child. i dont know what to do.
Name: char
Country: Singapore
 i do get numbness in my hands & legs - after my second pregnancy. has this numbness anything to do with being btm? i found out i am btm at my 1st pregnancy. luckily my hubby is not. that means in worst case my children can only be tm minor. i am glad i am still able to live a very active lifestyle - climbing mountains, walking long distances & trekking everywhere. just dun get yourself overexcited over un-important things. save your energy for things that are worth it! eat well, exercise enough.
Name: Asif
Country: Saudi Arabia
 i am tahl minor and my wife is thal minor too and allah gave me a cute smart son of 2 yrs of age who is thal major since 6months of age and on blood transfussions. my message to all thal families who him self or their loving one are suffering from this disease just remember taht allah is loving to his mankind 70 times more than the super loving mother and he gave us this exams to know that even with this disease we are thankful to him or no.if we read quran so we know how tough exams he given to the prophets even they were most superiors among the all mankinds so dont get depressed and also look for those who are suffering from cancers,untreatable diseases so then only we think that we are better than many...as atleast we have tratment options...so always pray allah that he gave us patience and tolerence to keep us on sirat e mustaqim(the right path what he showed to us)ameen.
Name: Jadav
Country: India
 hello guys... wake up..!!! i am a thalassemia minor too.. do not worry about your physic... you are normal person... you can live normal life.... do not worry about your health...eat healthy food... only..when you merry, check your partner's blood group..she/he should not be same.. then when thalassemia minor merry to thalassemia minor..there is 25% chances for a baby to have thalassemia major.. thalassemia major is a disease. not thalassemia minor... by "elecrophoresis" check up you can know that weather you have thalassemia minor or not.... god is great..he knows everything about you. he will take care for you.. do not worry..live happy life..
Name: Living Life
Country: U.S.A.
 hi there, i have thalassemia minor. so does my mother and my sister. i still have to take some iron or i find myself exhausted. i work out and eat right. been dealing with this all my life and i'm 55 years old now. my mother who is 74 was recently diagnosed with bone marrow cancer. seems her bones don't produce normal marrow which seems to be due to this thalassemia. these mutated blood cells etc. diet and exercise and lots of prayer, that's the life and we are living it.
Name: Lam
Country: Malaysia
 hi, i was told to have talas minor in my 20's, i am playing badminton very actively though i realise i have low engergy and stamina but i dont know why until the doc told me about this talas.monor. i am now 45 and 2/3 of my kids inherited the same. the younger one sames more serious and very skinny. my son started to complain join pain and not grow well in weight, low energy level, low appetide for food..anybody can tell me what is the best diet or any kind of supplement good for us? thanks
Name: Sami
Country: Lebanon
 my wife has thalassemia minor, and i was warried about it. but after 5 years of marraige my experience is when my wife gets pregnant she gets realy tired, but thats about it, no blood transusion or any of that, nothing special, and now we have two kids and both live healthy. well my advice is " no body is perfect" but we all can smile and do our best to experience a good life. take care and have fun and when you get tired, relax ..so what ..no big deal.
Name: Ruby
Country: India
 i am a mother of 8 yrs old daughter who has thalasemia major (detected) but has not the same symptoms. as she has not ever been given blood transfusion. by the grace of god, she is fine. but i am worried about her future. pls. can anyone inform me about the remedies that how she can be fit in her future. thanks
Name: veeral
Country: India
 hi, i am 30 male, having thalassemia minor :-) guys not to worry you can enjoy life at the fullest as i do :-}) how??? very simply eat healthy and workout. i am exercising since past 9 year having good athletic type body, jog for 3 to 5 km. i eat 5 times a day small meals but for disease i spicily eat spinach or its soup, egg white, multi grain breads, beat root boiled, carrot or its juice, beans, date palm fruit , if non veg. then red meat , goat leaver soup. please speak to your doctor and eat any. so ear healthy workout and stay fit
Name: Mr Fatigue
Country: India
 so we all are trying to convince each other that these symptoms are real. they are very real; we should know. it is the stupid name - minor - and the health organisations that will not formally agree the severity. maybe because there is little we can do. it's a deceptive illness. the confusion for me is that i'm told i work harder than the average person. so when im really low i know about it because i cannot cope. i have several businesses and commitments and need consistant performance; which is not what i get. the brain becomes as exhausted as the body. if you get depressed whilst fatigued, thanks to your low levels, you snowball into an angry person looking for answers. so here we are again. i must find this website every three months or so when i am just about to give up. hi everyone. best of luck to you all. maybe we need a fund to help us during these days/weeks. i certainly need a rest but with a modern lifestyle it is difficult.
Name: Shreya Chhabra
Country: India
 hi,i am suffering from thalassemia major.i m living a normal life. i m 21 years and do every activity that a normal person does. dont take this disease as a burden but as a challenge. i love dancing. and i do that. so plz remain cool. we people are also the part of society and can bring some changes in the society like others.
Name: Lisa
Country: U.S.A.
 i was diagnosed with btm after a highschool blood drive where my blood floated in the blue water they use to test iron levels. i was never told there may be symptoms of btm, and played division 1 volleyball and competed in bodybuilding. so don't let it hold you back! however, endurance training was always a struggle. i probably gravitated towards volleyball because it was anerobic (start and stop). after moving to the colorado mtns 8 years ago i started having problems with really cold feet and hands. i recently got married and my mom mentioned she had heard btm moms may have a hard time carrying to term at high elevation. has anyone ever heard of this? the only other symptom that i struggle with is a low energy level. thx!
Name: Tarun.
Country: India
 hi friends! i am 28 years old.i have beta thalasemia trait.still i am enjoying my life like normal person.
Name: Sam
Country: New Zealand
 hi, i am turning 16 and i am thalassemic and i was worrying/wondering if i could get my period... this to me is very worrying as all my friends have theirs and i would like to consider babies when i am old enough...
Name: brent
Country: U.S.A.
 i have thal. minor i have alot of these symtoms is depression a real symptom
Name: reader
Country: India
 hey, i am t-min patient n my would be wife is too, so what are the chances of transferring this to our child and can that be a major.
Name: Lucy
Country: United Kingdom
 i am one of the many alpha thalassaemia carriers. reading the your articles helps me understand what im going through, and know that im not on my own facing all these symptons. thank you for sharing your thoughts and experiences. may god bless us all and help us go through life with hope, courage and determination to live life to the full.
Name: Tangks51
Country: Malaysia
 i'm 54 yrs old and i found out that i', btm more than 15 yrs ago. i've joint pains since young and started to have even more aches and a my throat is always dry about 10 yrs ago. i also have gallstones. all the aches and pains disappear whenever i sweat from exercises, massages or heat treatments. i've resigned to accepting this and life has to go on. i got btm from my dad and he had his gallbladder removed and suffers from macular degeneration he is already 85 and still up and around. so don't be depressed, accept this destiny find ways to manage the pains and live a full live.
Name: Celine
Country: Malaysia
 hi. i'm 22 and have thal minor too. doctors found out when i was 3. as a child, i was always very sick and weak but my family let me have a normal childhood just like anyone else. they let me ride my bike as much as i wanted to as long as i didn't pass out and let me go for swimming lessons too. over the years, i've taken up badminton although i easily get tired compared to other people but i absolutely love it. i enjoy outdoor activities alot like cycling and hiking. just for encouragement, don't let this stop us thal minors from doing what we love although extra precautions must be taken of course. if it's within our means, just go for it! now, i wish to climb mount kinabalu but am not sure if i can go for it. a little contradicting to my previous statement but i am my parents only child and would not wanna risk it as much as i love it. dilemma. any advice on this?
Name: mountainmomma
Country: U.S.A.
 hi i have thalassemia beta minor and gilbert syndrome, i have also been living at 10,000 feet the last year, i have just started having problems with my gallbladder and stomach and spleen and intestines, i was wondering, could all these new issues be from living at 10,000 feet?? why is it so hard for thalassemia to live at high altitude??
Name: Morpho
Country: Singapore
 i am having tbm and the symptoms i have included shortness of breadth (especially when climbing stairs), feeling cold (often in the morning) and feeling tired despite 8 to 9 hours of sleep. in my opinion, people with tbm have less than 24hrs a day as they can achieve much less due to the constant feeling of tiredness.
Name: Raj
Country: India
 hi, i just wanetd to know what can be the after effects when a normal and a thalassemia minor patient go for the mariage?
Name: Darth Thallass
Country: Malaysia
 hey all. it's real good to stumble upon this site to know i'm not alone, n neither a hypochondriac nor insane. in response to g from usa, yes i do feel greatly numbed to sensations like smell and taste, besides fatigue, brain fog and falling ill often. on another note, maybe btm's should get their iron levels tested out as well, as the symptoms we suffer may be related to blood iron overload. i've read that btm's are more prone to this genetic condition. i'm going to get my levels tested soon. may the force serve you well!
Name: Senze
Country: Canada
 i have thalassemia beta minor, and i'm 45. has anyone sufferered with ed because of this disorder?
Name: Omar
Country: Zimbabwe
 i've been diagnosed with btm at age 36, and have suffered from the usual symptoms: tiredness, irritibility, inability to concentrate, depression, susceptibility to infections, reduced ability to control body temperature, etc. the average size of my red blood cells (mcv) is 68 units at best (whereas normal range is 76 - 100 units). by trial and error over the years, i've discovered that taking iron supplements of 100mg elemental iron iii twice every day, about 12 hours apart, boosts my haemoglobin levels and produces a red cell count well above normal range, thereby compensating for their small size. by checking my serum ferritin levels over a period of 15 months, it has been well within range, indicating no iron overload whatsoever. now, the the symptoms have largely subsided, but i must avoid heavy breathing when i exert myself physically, otherwise my haemoglobin levels drop along with the red cell count, and then i have to wait at least 3 months for them to slowly bounce back! i hope this joyous discovery and insight helps the millions of fellow-sufferers out there!!!
Name: Nora
Country: U.S.A.
 i am so happy to find this site. i am 45 years old. all of my grandparents were from sicily. i was diagnosed with thal. minor trait when i was 37. when i carried my sons,(in my early 30's) my obgyn thought i was anemic. he put me on iron suplements. boy, was he wrong! i don't know why doctors are so quick to prescribe iron supp. when i turned 37, i went for a routine physical with bloodwork. when my doctor looked at the results, he suspected that i was thalass.. so he sent me for a special test to detect thalass. he was so on target! i definitely am tired all the time. i ride my bike 12- 20 miles a night. so i do exercise, but i definitely have to take a little power nap during the day. lately, i have been experiencing shortness of breath. the main symptom for me is definitely fatigue.
Name: maedel
Country: Philippines
 hi,guys. im one of you too.im 19 yrs.old & still studying even though i feel dizy & tired always.but i still make it through everyday b-coz i have to & i want to..and it really pays up coz i topped my class & did get a scholarship for that.all i want to say is you just have to be strong,believe in yourself that you can and pray to god always.
Name: maedel
Country: Philippines
 hi,guys. im one of you too.im 19 yrs.old & still studying even though i feel dizy & tired always.but i still make it through everyday b-coz i have to & i want to..and it really pays up coz i topped my class & did get a scholarship for that.all i want to say is you just have to be strong,believe in yourself that you can and pray to god always.
Name: maedel
Country: Philippines
 hi,guys. im one of you too.im 19 yrs.old & still studying even though i feel dizy & tired always.but i still make it through everyday b-coz i have to & i want to..and it really pays up coz i topped my class & did get a scholarship for that.all i want to say is you just have to be strong,believe in yourself that you can and pray to god always.
Name: maedel
Country: Philippines
 hi,guys. im one of you too.im 19 yrs.old & still studying even though i feel dizy & tired always.but i still make it through everyday b-coz i have to & i want to..and it really pays up coz i topped my class & did get a scholarship for that.all i want to say is you just have to be strong,believe in yourself that you can and pray to god always.
Name: maedel
Country: Philippines
 hi,guys. im one of you too.im 19 yrs.old & still studying even though i feel dizy & tired always.but i still make it through everyday b-coz i have to & i want to..and it really pays up coz i topped my class & did get a scholarship for that.all i want to say is you just have to be strong,believe in yourself that you can and pray to god always.
Name: jana
Country: United Kingdom
 please can anyone help me, im 26 yr old female and have b t minor. i am always absolutely exhausted all the time, its making me depressed, irritable and giving me anxiety.
Name: Faisal Fazal
Country: Pakistan
 hi thanks guys
Name: SA
Country: United Kingdom
 hi arla, you will see my comments below your about iron suppliments. i am no expert, but from my own experiences about thal minor. my mum never told me as i was growing up. she always had a good healthy iron enriched meal on the table...and i grew up just fine. i think she did not want to tell me, otherwise it would play on my mind and she did not want that. by knowing it, it would have turned into a mental block, as everytime i was tired it would have played on my mind...i am grateful for that. we are parents can make sure that the kids get as much iron in their diet as possible...i have 4 kids, whenever they are tired i wonder if one of them thal! but i dont tell them, i boost them up with the right foods...when they are older i will tell them, maybe when they are looking for their life partener... and having kids. i only found out i was thal minor once i was already married and expecting my first kid. i dont think my mum thought about my husband ever been thal' also, so it never crossed her mind to to say anything...but as time passes, we become more eductated about this subject. even thou i am in the uk, i dont feel they know anything about thal..in fact in the states also, they have no clue. anyway what i am trying to say is, if they are thal minor, dont point it out to them yet, let it not become a problem in their minds. when the time comes to tell them...then yes, go ahead... i am presuming u are talking about thal minor and not major - if major, it is a whole new situation....
Name: arla
Country: Albania
 i want to know more about psychosocial needs of thalasemic children
Name: SA
Country: United Kingdom
 is it 100% correct that we can not take iron suppliments? and if so, why??? it seems to help, then why not? even if it does not bring ours hb levels to the norm...why does it matter if it helps? please if anyone can help me, or forward some links that explains this, i would really appreciate it. if we cant take iron...what food is the best of anemia? i always ate lots of meat, fish, beetrot and spinach....pls let me know if you know of anything else. thanks!
Name: SA
Country: United Kingdom
 hi to everyone that has written their comments and problems on this site...what provoked me to research thal' minor today, is that for the past week i have had headaches. i know that i have thal'minor. i have known this for years. as growing up, my mum made sure my diet contained as much meat as possible and lots of green veg. i went thru childhood just fine....got very tired but managed with a correct diet to get right back on track. i am now 28 with 4 kids...managed natural pregnancies with all 4. the problem was for the first 3-4months...where i felt me and the baby were fighting over my nutrients, hence i would get very tired, pale, sleepy and of course lots of dizzy spells. but as those months passed i was fine for the rest of the pregnancy. again problems would arise after delivery. i would get weak but yet again with a good diet and vitamins i was fine. i know that i get tired very easily and look pale most of the time! (thankgod for blusher!!!). but the reason for me writting on this site - is because, i have been told for years that i have to take iron supplements. i take 100mg a day --- well i am supposed to, i leave it as soon as i feel well! and when i am feeling down or on my period i start taking them again! but i feel after a week that i am much better...i some points in my life i have been hb 6! at the best times i have been 10! but what i did not know until reading above from peoples experiences, is that if we have thal' then we can not take iron supplements????
Name: SA
Country: United Kingdom
 hi to everyone that has written their comments and problems on this site...what provoked me to research thal' minor today, is that for the past week i have had headaches. i know that i have thal'minor. i have known this for years. as growing up, my mum made sure my diet contained as much meat as possible and lots of green veg. i went thru childhood just fine....got very tired but managed with a correct diet to get right back on track. i am now 28 with 4 kids...managed natural pregnancies with all 4. the problem was for the first 3-4months...where i felt me and the baby were fighting over my nutrients, hence i would get very tired, pale, sleepy and of course lots of dizzy spells. but as those months passed i was fine for the rest of the pregnancy. again problems would arise after delivery. i would get weak but yet again with a good diet and vitamins i was fine. i know that i get tired very easily and look pale most of the time! (thankgod for blusher!!!). but the reason for me writting on this site - is because, i have been told for years that i have to take iron supplements. i take 100mg a day --- well i am supposed to, i leave it as soon as i feel well! and when i am feeling down or on my period i start taking them again! but i feel after a week that i am much better...i some points in my life i have been hb 6! at the best times i have been 10! but what i did not know until reading above from peoples experiences, is that if we have thal' then we can not take iron supplements????
Name: an indian xyz
Country: India
 hello everyone .. i am an indian .. 31 yrs old ... am very happy i found this informative website. i am recently diagnosed with thal-minor and am familiar with most of the symptoms. i have been asking all my doctors through out my life about my breathlessness but noone ever could give an accurate answer. but when i read this website it all makes sense now. other symptoms in me - getting a little grey hair slowly (not sure if it has anything to do with t-minor), dizziness sometimes, never had problem with motivation or laziness. i have completed my engg study and this yr i am going to join a top business school. no issues with energy level as such... sometimes get muscle cramps, no problem with headache or joint pain, no issues with insomnia, yes i get irritable sometimes, i have cold all the times although in minor form, no reaction to coffee. one of my nephew ..3 yrs old ... has thal-major and he is living on blood transfusions every 4 weeks.. please do post on this website if anyone knows about any permanent solution to thal-major. thanks everyone and best wishes to all of you.
Name: mehek
Country: India
 hi guys.... even i've been diagnosed wid beta thalassemia minor...ma palms n feet swell frequently and i get rashes on ma skin....does nebody has ne idea dat is this related to thalassemia?? even i sometimes feel pain in my chest...also have irregular monthly cycle that i don't get my periods for even 3-4 months.... plz do reply if u hv ne clue....thanx!!
Name: Fatima
Country: South Africa
 to kaamilah sa. hang in there. i have started fitness traing and although i get tired i do feel much better and have much more energy. and try to eat natural foods. hope u feel better.
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