Living with Thalassemia...What is Your Life Like?

Hi


Am Shareefa (Akka),

At first i found life boring when i didnt know this website and also my pals in Maldives. But now I should say being a thal i dont have much probplems other than one. That finding a good life partner. As a thal I think am doing good like others. Working in a shipping company for last 5 years. I have got promotions and also pay rises. My superiors are v. happy about my work, they say that i have no difference being a thal. Am v. grateful to GOD who showed me this website and also my thals brothers and sisters in this world. We should take life challenging and try to achive our dreams and goals. I feel much better after i met Andy and Shilpa and my friends in Maldives last thalasseamia day celebrations , June 2006.

My dear brothers and sisters if there is a will there is a way. So, lets go ahead in life and life as normals. Well no difference v been thals, only thing is it mite take bit of time.


U may kit with me always.

My mobile - +94 777209174.


LONG LIFE THALS.

LUV
AKKA

Hey, you are finally on this site!

Don't forget to post regularly and make sure you post how your life has been in the past.

Take care!

I am luck that I was born in Hong Kong and later moved to US. I had been in good hand over the years (Dr.V is great in Oakland Children Hospital) and have been relatively complience. Therefore, I do not have any serious medical condition yet. Thal does shape my life. It brought me to God, so I guess it is not a bad trade off .
Thal does not really limited my life. I graduated from UC Berkeley and am currently working in Quality Control in a biotech company. I plan on go back to school for my master after some time off.

Hi, I am Stephen from Singapore.

I do not represent Singapore in what I say, its more of me myself.

I am a Thal minor. And have been living OK. I can run 6km, i can play, i can do all kinds of sports. But i cannot donate blood.

Things are normal mostly, except that i notice recently that i seem to have depressive traits. I tend to think negatively more also, although I have been mostly an optimistic person. I become sad and disappointed easily. And only just, that I read in Wikipedia (which led me to this website) abt Thalassemia, that I realise that Thal minor patients may also suffer problems of asthma and/or bipolar disorder (depression or at least mood disorder).

Does anyone here have similar experience?

I dun like being unhappy! But i dont know what to do to alleviate it. It seems a psychological problem, but I have read that bipolar disorders, or depressions are usually biological problems.

I dont know what to do! Its frustrating. Its affecting my relationships.

Is there something I can eat or do to have a healthier psychological mental balance?

First of all, welcome to the site! Don't be sad! Be optimistic! Think of the fact that being a Thal minor, you don't need to be transfused or have to go through Desferal every night!

Thank All-mighty God for all the blessings that you have. Think about the ones who are in worse shape than you are. Try to stay happy and make friends! Take your Folic Acid daily and everything will be o.k

Welcome to the site Stephen. I possibly have Thal(Minor) too {not sure as the doctor's day I might have it as my MCV is low but the A2 values are in normal range}

I am a Thal minor. And have been living OK. I can run 6km, i can play, i can do all kinds of sports. But i cannot donate blood.

May I know - who told you - that we cannot donate blood. Is this because of Thal(Minor)?? I have queried a lot of doctor's on this and after their affirmative answer about Thal(Minor's) able to donate blood, I have donated blood a lot of times

-Narendra

I think the decision on whether minors can donate is based on the Hb level, the same as anyone else. If your level is too low, they will not allow you to give blood. Many minors have fairly normal levels so there should be no reason for not donating.

There werent a doctor when i went for the blood test at the transfusion centre. The nurse however, who did the tests on me said that my blood is not suitable for donating. Possibly because I am anemic, and hence need the blood more for myself. haha.

There was a test on the blood they drew from me. They dripped a drop on what looks like copper sulphate solution, blue clear liquid. And while other's blood sinks, mine floats. I suppose in that light (no pun intended), it has already failed the density testing.

I would love to donate blood though, because of the health benefits, the regenerating of new blood cells, etc etc.. and u know I am not a lady, so i dun have means to err... lose blood regularly... Heh heh.

Does Folic Acid really help? My mum only takes them when she feels weak and sluggish. Does it have positive uplifting effects? I suppose it increases general health? If so, I would start a daily dose of it. I read that Omega 3 also helps with moods. Maybe I oughta get a big bottle of cod liver oil.

Thanks for all the response. I appreciate them. For now, I will start my daily dose of cod and folic. Shall review in a mth!

Thank you for the reminder of my creator. You are right, Sajid. I should be thankful. His power is effective when confronted in weakness.

 

Folic acid is needed by the body to produce red blood cells. It is recommended for all thal patients, minor through major. It is the single most important supplement for thalassemics.

Being anemic can be a factor in depression, as are many health conditions, such as an underactive thyroid. Knowing this can be of help, when you realize that there may be factors that have nothing to do with your own mental state that are making you feel down. Finding some support with people who have similar problems is also helpful. Once you realize you are not alone, it can make it easier to cope with life.

I am a 41 year old thal inter patient living in AZ, USA.  I have had a very positive, productive life thus far.  I am happily married for 17 years with one miracle child, she is now 14 years old.  I have received my bachelors and master's degrees, with the assistance from the Cooley's Anemia foundation.  I am a teacher, and loving it. 

Yes, there are factors to having thal that bring me down at times.  But, I have such a large support group of friends who are there for me during these times.  They have sat with me during hospital stays and assist whenever my health has the better of me.  My husband has always said that he married me "in sickness and in health," he has done a wonderful job with the "in sickness" part and is ready for "in health" 
He knows my limitations and steps up to bat when I have hit my daily wall of exhaustion.  I thank God daily for his love and support.

I have been receiving weekly procrit shots for 6 years and they are helping to maintain my hgb around a 9.  Thank God for my medical insurance who pays for these shots.  I would be in a world of trouble if they did not, cause here in AZ teachers aren't paid very much.  My spleen was removed when I was 18 years old and I have been carefully managing my care since then.

Overall, life has been good and I try looking to the positive on a daily basis.
Keep your chins up.
God Bless
Mrs. T

What Is My Life Like   




ROCKING & COOL

Truely I have enjoyed each moment of it till date & don't bother about the future.

Stepchoo

In reply to your comment about Omega 3, it certainly does help with concentration. However the omega 3 found in cod liver oil is not concentrated enough to have the desired effect. The best form to take the oils in is with a omega 6 supplement. this can be obtained in both capsule andl liquid form. Many people find that the taste repeats on them. This can be avoided by taking the vegetarian capsules which are formulated from evening primrose oil and fax seed oil.

The supplements help so much that Durham council is now giving them free to all 16 year olds who live in their area to improve their exams in the summer. Results can often be seen within 2 weeks and some people recommend taking a double doseage for the first 2 months.

Omega oils are obtained naturally from oily fish e.g. makerel , trout etc and from ofal. these are product that modern western diets are often deficant in.


Now as for how IO live with thalassemia minor,I have had three times in my life when it has caused me problems:
First when i reached puberty. This is when the condition was first discovered. I was tired all the time and my doctor insisted on giving me iron tablets which caused so man stomach problems!!

Secondly when I was pregnant. I was constantly tired and despite my doctors attempts at supplying me with mild iron syrups and injections my iron count did not improve. Eventually he gave up. We now have two grown up children who do not have the condition, but I did have a miscarriage inbetween them and do wonder if the thal had anything to do with it.

Thirdly, I am now peri menopausal and having great problems, (see my posting on the Thalassemia minor section),It seems to me that in the last 30+ years, GP's dont seem to have learnt anything about treating the condition. I am still being told I can take iron supplemen cant!!

One thing that has always bothered me about my thalassemia is I dont really know where it has come from.Yes I know I got it directly from my father, but because I didnt know his famiyl, I dont know if he got it from his father or mother.
Everytime I see a doctor and tell them I have thalassemia they tell me I cant have because I am white and English. They dont believe me till they see the blood test results!!Then they insist I must have some Meditarianian blood. I suppose I feel like part of my heritage is missing. My father is now dead and I dont know anyone to ask to discover the missing link!!

Hi sue,
    Thanks for the info. on omega 6 oil. I think I'm going to try it. I wish you were not having difficulty with your thalassemia. It is so frustrating when doctors don't know anything about it and they act like they do, or they give you information that is not right. 
     Like you, I also wish that I knew more about my family's health history. I know my father had the minor form, and that some of my other relatives had or have the minor form, but I don't know yet how I got intermedia.
     Well, it's been nice talking to you. Good luck with your health.  Jean   
     

Hi Jean,

it could be that you have also an silent mutation what is not easy to detect (not by electrophoresis only by DNA analysis). Combined with an other mutation or if it is homozygote it will cause an thal intermedia.

May I know - who told you - that we cannot donate blood. Is this because of Thal(Minor)?? I have queried a lot of doctor's on this and after their affirmative answer about Thal(Minor's) able to donate blood, I have donated blood a lot of times

Hi Narendra, Hi Stephen

I'm from Singapore too and a thal maj. We have this policy here in the blood banks where they do not accept blood from people who are anaemic or are thal min. Not sure exactly why, but it's probably they are concerned about the welfare of the thal min after giving up blood when they 'do not have enough' themselves.
However I just heard that the blood bank now accepts blood from people who are thal min. Not too sure how valid this is but maybe Stephen you can give it a try again and let me know how it is. They probably changed the policy due to a constant shortage of blood here.