Adults living with Thal, how do you support yourself?

Get you vitamin D level checked, as deficiency is very common and it adds to the tiredness of thal minor. A minimum level of 35 should be your goal. I also recommend a B complex. This can be in addition to the B vitamins you are already taking, as B vitamins are water soluble and need to be regularly replaced.

Hello!
I'm 29, I have thal major and I support myself just working. Either way, I asked for a disability % a year ago because in Spain when you have the disability, your enterprise receive some money from the government to employ you. This gives them a compensation for any possible disadvantage due to having a disabled person working with them. Nowadays, I'm still waiting for the appointment for the disability.

However, as I was saying, I have been working full time and without the disability for 8 years and everything has been ok. I looked for a job that let me go to the hospital out of working hours so I started working in a call centre. I work from 15h to 22h and some Saturdays so I have all the mornings to go to hospital.

Hope you all have the best of lucks finding a job.

Kisses,

Laura.

Hi

I work full time in a busy gov't office. Ive always been a hard worker and feel like I have to put in twice as much effort as a non-Thal to reach the same results. I wake up tired, ignore it as much as I can during the day, to the point where I collapse or feel sick. Doesn't serve my health any, but I don't feel bad about my contribution to the team efforts. Fortunately I have a great boss who seems to have a good understanding of my situation and a great team who supports me when I feel overwhelmed. I carpool to work, always someone else driving, often feel sick on the way and have to take a few mins to recover when I get there.

I go to sleep between 8-9pm and wake up at 5:30 (to be out of the house by 7 and come bk home at 5:30) low quality sleep with trouble balancing my body temp and waking up often during the night too. Usually can fall asleep fast again but not always. Train blowing it's horn at night nearby doesn't help either.

I used to have my own business - holistic practice including energy work, crystal therapy, meditation and so on. Unfortunately when it stopped being enough to support myself I had to closely down and look for something else, but all that time it was running and I had time to rest, meditate, use my crystals regularly and maintain an overall healthier lifestyle (as in just giving my body time to recover) I barely ever got sick, felt exhausted, wasn't getting dizzy as often and even brought down my ferritin and up my hemoglobin. (my ferritin is now within limits but at the lower level, so I'm now taking a supplement to balance that out.)
However, as soon as my body didn't have a chance to rest much anymore and I didn't have time for regular crystal auto-therapy, fatigue and all the rest of my Thal minor symptoms came back with a vengeance. I've had a whole buch of tests done recently and all came back clear, which means Thal + stress are the culprits.

I'm fairly certain B-Thal minor wouldn't be considered significant enough to qualify for disability here (BC, Canada), and even so, the amount wouldn't be enough to live on. So I have to keep working until my creative mind finds a better solution to this issue.

Blessings to all

Andy,

You are right - I notice a lot of change in lil A when I give him B complex. 

Sharmin

I am thal major 26 working as a financial analyst in Riyadh Saudi Arabia and belong to Lahore Pakistan. My parents brought me up and supported me till my MBA. Now that I am on job I contribute to the family income/expenses as usually any normal does in our society. Just yesterday I passed CIA part 1 exam from my own pocket I have a fire inside me to grow and excel and for that I am studying mroe and more. I am not a geek but rather a person who enjoys a lot, is very very and always romantic ;) and always hungry and on for trying tasty food and wanna see and travel the whole world and become a BIOLLIONAIRE ! ;) yeah thats what my small ambitions incomplete list looks like. Lets hope for the best.

Please when anyone introduces themselve plz point out whether its only thal or its thal major. cuz thal majors are worst case scenarios always and other thals may or may not go through those hardships that thal majors experience.

Now I am making future plans of establishing business, do Phd from United States and one day be on top on Forbes richest list ;) 

Atleast I have my dreams ... and no one can take them away from me ... :'(

Congrats on the exam, Waleed. I've known you since you were a teenager and have never seen you allow thal to get in the way of your ambitions and development.   

Andy its actually thalpals who really keep me UP . When I compare myself with men like you with all those efforts for thals I feel to have wasted my entire life and thats what pushes me to do something/

I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.

Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).

That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus?

-Pratik.

I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.

Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).

That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus?

-Pratik.

Nice approach of being self employed, my one friend is networking expert doing job full time since last many year.
I am facing same problems as described by you and not having strength to work full time in job. you predict early regarding being self employed and it's correct.
Sometimes i also wonder that if i get working at home that would be great for me and why i don't choose BCA instead of CA?

I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.

Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).

That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus?

-Pratik.

What is the name of the sites  run by you? i want to visit it. plz provide the links.

Hi Dharmesh, its not necessary that you chose CA and not Computer related field. You can expand anytime. You don't necessarily have to be in computer field for working over it, but if you find interest in it, you should start learning online, there are loads of articles & tutorials on internet. I choose this because since my childhood, I loved to be with PC and mess around with all these things. If I would be having interest in CA (Chartered Accountant, for those who don't know what CA is.), then I would have chosen it happily & expand in it.

Btw, I am doing my diploma in computer engineering, currently.

Hi Dharmesh, its not necessary that you chose CA and not Computer related field. You can expand anytime. You don't necessarily have to be in computer field for working over it, but if you find interest in it, you should start learning online, there are loads of articles & tutorials on internet. I choose this because since my childhood, I loved to be with PC and mess around with all these things. If I would be having interest in CA (Chartered Accountant, for those who don't know what CA is.), then I would have chosen it happily & expand in it.

Btw, I am doing my diploma in computer engineering, currently.

Hi Pratik,
It is not such like that i don't like CA but infact i really luv CA. I am holding Accounting Technician Certificate given by ICAI. but at this part of time am not able to work continuously like normal person, so sometime i thought that if i was doing some computer course then i might got some computer job work which can be done at home with my convenience and comfortness. Because this course and professional career is requiring much hardwork than any other field and in addition you need to visit client's office in the city or outside the city for audit or accounts . that is much difficult.
oh yeah ,  All The Best for your computer engineering course.

I work full time, and my job requires me to be on call at night. I am thal minor, and my job is physical. When I am having a dip in how I am feeling, it is really hard to get through the day but I force myself and sometimes resort to lunch time naps. Luckily, I have sick days, and short term disability so I was able to take time off when I was really sick this past July (blood transfusion and iron infusions). I am working towards getting more education so if I feel like I cant do such a physical job anymore, I will have options.

Hi all,

I am Debadatta. I am a software engineer. Basically I am working as a web developer. Working as a web developer I don't feel any fatigue.  I regularly come office to work. I have been working 3+ years in this field.

But I am worry about, I am little bit less communicative than others who are working with me. 

God Bless You, All

I just recently found out that I have Beta Thalassemia as a kid and was born with it. I haven't got my labs in front of me just a voicemail from my doctor. My red blood count levels were high @ 7.12 (range: 4.2-5.8) and my doctor ran ferritin test along with a whole bunch of other ones which came back fine. I have food allergies to Wheat, Soy, Walnut, Peanut, Shrimp, Corn and sesame (I have ate all those forever and just found out I have sensitivity). My symptoms are fatigue, abdomen bloating / nausea, insomnia and shortness of breath.

I have been working since the age of 16 and always knew something was not right and why I would get tired easily. I did good for my self without ever knowing I had beta thalassemia until the age of 28. I lived all over the world, hold 3 citizenships, 2 degrees (finance & economics) and work at a fortune top 50 investment bank.

I am not worried about my self and very thankful for what god has given me. I will live with what ever is thrown my way and accept the fact that one day I must return back to my creator. I worry about my son and possibly my future kids we might have. I am sure I am a minor and I don't think my wife is thalassemia since my son is 3 yrs old and show no signs. If anything he is probably a minor as well.