Discussion Forums > Thalassemia Major

Hi, I'm new to this forum

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Linda528:
Hi,
Thanks for replying. That's what my husband and son's hematologist say that I have intermedia but my 2 hematologists both says I'm major. My symptoms and conditions both leads to intermedia but there is something that is making them classify me as major. I have an appt next week and I will ask my dr.

I'm kind of new to the anitbodies thing. I'm not sure if they did a genotype or not but I do know for the past 2 transfusion they have found me the most compatible blood. I'm A+  and they have gave me A- blood before and I did find with it. That was when I first had my transfusion ever. I don' t know if I will be getting any treatment for the anitbodies or not.

Well my bro was diagnosed when he was a child and he had transfusion every 6wks. He refuses to go into the hospital to get more transfusion because he said it hurts this is when he was still a child. My parents went with it and stop treating him. I have no idea what was running in their heads. He's now 22yr old and his thal had seem to stay stable. I was never diagnosed or treated for thal as a child. Until I was 19yr old (2003), going to college and I'm not sure if it's stress that trigger me to be so fatique so I went to get my blood checked and it was down in the 4 so I was transfused.I new I was always anemic because of my bro and his condition but I never knew I inherited a blood disorder. I had 2 other transfusion after that. My husband and I didn't have insurance so I stop getting transfusion and I was pregnant with my son who was born in 07. Being pregnant with him somehow keep my thal stable for those nine months. I had a transfusion a few months later after I had him and my lvl was in the 5's. We decided to go ahead and get it done with no insurance and jobs cause we were both in school. It was around $3000 and we payed it off slowly with our grant money.

My hubby who has been very supportive is now in the AF and we get free health care. Now I'm back into getting treatments and stuff. I forgot what my dr. said about my ferritin lvl but she did say it hasn't hit the pt. where I will need to go on exjade yet. I did all the pre-testing for that drug though so it's there for me when I need it. I will check on that MRI and I also have tons of questions for her. I want my body to be in good condition because we are hoping for another miracle baby. I'm happy to have found this board because I have so much to learn about thal and everything.

Linda528:
I have just noticed I have 2 posting. I guess last night it didn't show up and I repost it somewhere else. Is there anyway I can have one of my posting deleted?

Zaini:
Hi Linda,

I am merging both of your posts.So it'll be easy to detect new replies.

Zaini.

Linda528:
Thank you :)

Andy Battaglia:
Hi Linda,

It may be because your Hb dropped to 4 that they want to classify you as a major. If this is an isolated occurrence and your Hb normally maintains above 7, then you would be classified intermedia. Intermedia is a somewhat vague classification anyway, so it really makes no difference. Your treatment is based on your Hb level and whether or not you need Exjade will depend on your iron load. At this point, it would be better to have a liver scan to assess your iron load, rather than rely solely on the ferritin tests. Where are you located? It would be best if you and your brother saw thal familiar hematologists. The Cooley's Anemia Foundation can help direct you and possibly also have some ideas how to cover the care costs if you don't have insurance.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

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