New Here

Hi! I'm new to the site. I have thalassemia minor. My brother had Thalassemia major. He had a transplant in 1982, I was the donor. I'm here bacause I think my brther really needs someone to talk to, he isn't really a computer person. He has gone through alot. he's survived GVH, cancer. I think he is having a lot of problems, he doesn't really talk much.  There is a lot he needs to let out and needs to talk to someone that's been there, he is trying to live a somewhat normal life, but from the outside he looks sick and has a hard time. got to go. Maria

Hello Maria,

You mention he had Thal(Major) so I assume the transplant was successful. There are a few members here who have gone through cancer and in another case Khalifa's son has Abdul Wahab who also had a successful transplant has gone through the GVHD

From what you have mentioned, it seems like it would be better for him to talk to someone. May be a counseller. Where do you guys stay? If you guys in the US, there is help available. In any case, there are lots of members here who can share their experience and may be talking about those experiences to him, might help

Hi, I had to register again and change my username. I didn't want to, I'm amalfi2 now.

Yes the transplant was successful. I'm in Connecticut my brother lives in New Jersey. He's living with my parents. My mother has been concerned about him. He does not want to see anymore doctors, he has a very negative attitude towards life. He wants a family of his own. My father owns a restaurant in New Jersey and my brother works there. I would like to know if there are meetings or what not that he could go to, to talk to people that feel what he does. I have to go again my daughter is crying she's 7 months old.

Hi Maria and welcome to the group,

There is a chapter of the Cooley's Anemia Foundation in New Jersey. You can contact them through the info listed below.

New Jersey – Christine Somma
732-688-2279
somma84@aol.com

Has your brother had any counseling?

My brother has never gone to counseling as far as I know.

Thank-you for the info I am going to tell him about it.

as for my screan name , i was trying to change my e mail address and typed it incorrectly, so i never got the second email and could't log in. please excuse me, i'm  typing with one hand. got to go.

i can't seem to hide my e mail address,I checked the hide e mail box. What else do I have to do?

Your email address is hidden. If you see it in italics in your profile it is hidden. I checked with my test ID and cannot see it.

Hi Maria,

to the family. First of all I would like to congratulate your brother for fighting and eventually winning over Thal. If he has done that, then he can do anything!

What are his concerns about the life now? Now he is a normal healthy person and should have no set backs in life due to Thal. As a matter of fact; even Thals. now don't have to feel any setbacks in life due to the constant developments in medical treatments.

The more he stays alone, the more his negative attitude will get stronger. I think he really needs to have a chat with us here. For this you as a wonderful sister that you are, have to play an important role in changing his outlook on life. I applaud your efforts for your brother even when you have a family of your own to look after.

First of all tell your brother about the wonderful people with Thal. who are going about their normal lives. Among them are those who can manage it even will all the tedious treatment that has to be taken in our daily lives like Desferal and regular visits to the doctors.

I advise you to contact Miaki on this site. She is definitely a role model for me and every Thal. to lead a perfect normal life. I believe that she will be the best person to help your brother look into life positively.

Wishing you all the best for your brother.

Thank-you Andy, I didn't notice it was in italics.

My brother is fortunate to have won Thal and I am sure he knows that. He has had a lot to fight his whole life. I wish I could list all that he went throughbut I'm sure I've forgottten many things.
He had blood transfusions until he was 8 and at that age he got the transplant I remember those years of going to the hospital. I'm a year yonger then him, I would have done anything to take his pain away. I know him better then anyone and can see him suffering inside. After the transplant he got GVHD and he has scars all over his body(Face, headhis hair doesn't grow on the front part of his head. He wears a wig and a hat. His nails grow in funny, ect). He's had hepB, lupus, he had to take male hormones because when he reached puberty, since he had my bone marrow, he was getting breast. So he had to give himself shots in the stomach for a ling time. When he was 18 he had his first tumor(cancer) on his head, which came back twice. then a year or so later he got a tumor behind his ear and then again on his head. His doc said that he got so much radiation, that if he gets anymore tumors that won't radiate anymore. A few years ago he lost his speach, and movement on hi right side. We were so scared, the doc said that he might have brain tumors, and if that was the case nothing could be done, It turned out he had fluid in his brain and three infections. He was operated on and the fluid was removed, he was put on antibiotics and got better. But his speech is still coming back. He refuses to go to theropy. He's lost all his teeth because of the radiation, and doesn't want to wear dentures.

This is a little summary of what he has been battling with his entire life. Fron the outside he doesn't look normal and he hates looking at himself in the mirror. He is 32 years old now, he is a great person. He has always been outgoing and always so full of life, he always made people laugh. He has been so bitter, He is becoming a different person.

So yes he won Thal but there have been so many things that he got because of it. He has been fighting for his life up until now. I think he is just worn out and gining up.

I'm sorry to maybe upset any of you.
Maria

Hi Maria,

After reading your post I'm speechless. I wish I could meet him in person to comfort him and tell him how brave he has been to go through all that and should not give up hope for the future. In-fact I would like to learn from him how he managed all that and he should be the one who we can see for help and guidance.

Tell him his friends from all over the world are waiting to meet him.

Thank-you

I will tell him, I'm sure your words will give him a smile.

Hi Maria,

welcome aboard,i don't know what should i say after reading about your brother's battle with life,i don't have words to express my feelings,what he's been through is terrible,i wish my words can help him,tell him from me that he is a great guy,fighting so bravely,i know anyone can loose patience with all this going on,and if he made through this,he sure is a strong person,i know it's easy said that done,but i think we are lucky to be born in an age of scientific advancement,i hope he'll come round this,tell him that he has a very big blessing and that is having a sis like you.

ZAINI.

Hi Maria

Welcome to the site. I am really so impressed by the spirit that you brother has. Passing through all this would definetly have its negative impact. He is now so tired, but he is a real fighter and i am sure he will pass this too. It will be a pleasure talking to him. May God bless you two

Take care
Manal

Maria,

I have sent a copy of your post to Dr Polchi in Italy. She has been very involved with the after care of the son of Khalifa, who had a BMT two years ago. I have asked that she give any advice she can to help your brother. Hopefully, we will get a reply. I do feel that not all medical avenues have been tried here and there may be something that can help your brother's health. I am certain that any real improvement in his health would do wonders for his outlook.

welcome Maria.
I'm a Glad you joined this forum ,for moral support .Your situation is very hard, watching your brother health deterioating and struggles must be hell for you ,I am sorry for that and I admire your strength,and courage you are best sister in the world.

As for your brother he must be exausted ,on top of it all he has to work in your fathers bussiness ,how unfair life can be some times, I think he is a very strong person and has dealt with tremendous health issue. As it has been mentioned your brother need counselling and a good holiday to enjoy himself.
I also can undestand his lack of apathy, it can't be easy coping with all these issues .
I hope he does access Psychological help and  have a nice break from it all.
Maria you need help too.because things like this affect the whole family,
I hope you keep in touch with us here.to get some moral support .Good luck to you and your brother.
Kathy