Could you help me?

Hi everyone!
I’ve discovered this forum while I was searching a forum in Spanish about thalassemia, because I’m Spanish, but there isn’t such a similar place in Spanish. I’m 21 and my boyfriend is a thal maior. I don’t feel OK , because he is not OK. He feels more and more tired, and have frequent highs and downs, and sometimes he feels really depressed.  Although I try to cheer him up and I’m always in tears for him, I feel it’s not enough. I really love him, I would do anything for him, I’ve never been so fond of anyone, and I’m crying at this moment, thinking about all those things he is afraid of. One boy with thal that he knew died two years ago when he was 21, and he is really scared , since he is 21 too and he just want the day of his birthday to pass off.
I need to talk. I need to know people living with thalassemia maior, I have to give him hope. I just wish I were stronger… He thinks he will end up living like a vegetable, even more dependent , that he will not be good enough for me. When he feels really low, he loses every little illusion , even our love is not enough reason to fight. 
Please, I need to know more about this disease,but the human side, children, men and women living with thal, because I want the best for my love. He is my life and my happiness.
Thanks everyone for reading, I’m looking forward to your answers.

  Ariabella,
I hope you begins by undestanding that in life there is no guarantee. no one knows for certain how long we have to enjoy live.

"Nothing is either good or bad.It's thinking that makes it so"

Encourage your boyfriend to have counselling ,knowledge is bliss and it can enhance his life too,
I wish you good luck in finding the answers and a solution to your worry.
Kathy

Hi Ariabella and welcome,

Do you know what treatment your boyfriend is getting? Is he taking a chelating drug to remove excess iron? If he keeps up on his treatment, he can live much longer than his friend did. It is very important that he complies with all of his treatment.

I hope you will continue to give him your support. As Kathy said, he may benefit from counseling or a support group. He needs to understand that with treatment, he can live a good life. Perhaps he could look at this site and learn more about treatment and also what to expect in the future.

Hi Ariabella,
to the group!

As Kathy said, he may benefit from counseling or a support group. He needs to understand that with treatment, he can live a good life. Perhaps he could look at this site and learn more about treatment and also what to expect in the future.

I think this the best thing you can do. Can you guide him to our site? It would be great if he sees everyone fighting bravely with something that he fears. Maybe we can spark up hope in him and encourage him to lead a happy life. If there is some language issue then you can relay all his queries and fears to us. I'm sure that will help you understand him more better too.

    Welcome!!!! Ariabella! Do feel at home and hope you can find the answers to your questions..... and hopeful you and your boyfriend can join in our big family.......I believe thal patients like me have a bigger chance to live longer now that there's a lot of new studies about the disorder.....

Hi Ariabella,

  to the group.

I must say that your boyfriend is soo lucky to have you..as you are soo concerned about his health and well being. As Sajid and kathy said, I think you should introduce your Boyfreind to this group. Once he sees that he is not alone.... there are soo many people who are successful even with this condition by taking care of their medical needs, with strong determination and hard work, he will get his confidence back.

Hi Ariabella,

You are already doing what is most important for anyone with or without thal. Being there for him,loving him, giving him hope and being so much concerned, this is exactly what we all need in times of our deepest depression and fear.

I have seen many thals go from a very young age and I know it can be scary to see fellow warriors fall in this lifelong battle. I just lost a very dear thal friend, who I was sure would outlive me. At times of depression, crisis, fear or sorrow it is lifesaving to have good close friends, people who love us, need us and care deeply enough to pull us back from that brink.

So continue to be his strength, your care and concern is obvious.You are already giving him hope and a big reason to stay healthy, by loving him and being there for him. Trust me it really helps. You are stronger...than many. Thals are strong people and people who become their partners are just as strong people.
   
Besides this, arming yourself with knowledge about thal and introducing him to thal support groups like this one could do wonders. Sometimes attending an International conference can also change one's attitude drastically as you see and meet such brave and courageous thals from around the world.

My friend was one of the most cheerful and bravest thals I knew; and I have faith that we all can and do have it in us to have courage and spirit.
Especially your friend who is only 21, please tell him that, thals today with good treatment can live upto 5 decades. There are just as many thals who are alive way past 21.

As for death, it can happen anytime and to anyone, noone knows when they will die. Death is not thal specific.
 So please take heart and cheer him up as well.


Cheers.

Well said Shilpa ! 

ZAINI.