Thalassemia

*I* have thalassemia and so does my mom. we have the "minor" type, which basically means that some of our cells are wonky and that can make results from blood tests look weird (we're both succeptible to regular/iron deficiency anemia too which is easily corrected with iron pills if needed).

i don't remember having to have any extra blood draws or anything growing up. if i see a new doctor and forget to mention it, they kind of freak out when they see my blood tests, but as soon as i tell them, they don't worry about it.

personally, i have NEVER had any health issues related to the thalassemia aside from the general anemia that crops up sometimes. good luck!

T.,

What a great response you got from Tara! Isn't it great we have a place like this to get the support we need to put things back into perspective. How awesome!

Hope all goes well with you and your family, i know you must feel some relief after hearing from Tara.

Enjoy!

RoseH

is this because of her newborn screening result? or something they saw on blood work? If so they are doing further tests because it is possible she is just a carrier of thalassemia. There are many different types,some of which would not affect her health, so I would not be too concerned yet. I would ask what this diagnosis is based on and then I would ask to speak with someone that knows what they are talking about to explain what testing they are doing. I doubt that the nurse from your pediatrician's office really knows anything. You might request to speak with a genetic counselor in your area. They might be willing to review your daughter's results and then discuss them with you by phone so you at least understand what is going on.

I'm sure you feel more at ease with some responses, but I am just seeing this question now. I have been diagnosed with Thalassemia as well as my brother. I have never had to have any extra blood work done although when I do see a new doctor or get blood work done, I can always expect a call from the doctor saying that I need to re-do the tests. Thalassemia causes your blood work to look a little crazy but it has in no way, shape or form impacted my life except to say that I need to take a vitamin with a little extra iron and folic acid. Not too bad. Don't get stressed!

Hi T.,

I can't imagine even a little bit what you are going through. I have a daughter who was born with birth defects and has had numerous surgeries to correct them. She is also high functioning autistic and was tested for Thalassemia when I was pregnant with my 3rd child. We hadn't been for genetic testing yet, when I found out I was pregnant and Thalassemia was one of the test they decided to run due to her birth defects sometimes being caused by that. I can remember them going over the disease with me and the chances of my next child having the same thing if she were to come back positive. I can remember having to wait 48 hours for the results. I was totally useless during that time frame. Her test did come back negative which is why I say I can not imagine what you are going through or feeling except for the feeling of never wanting to see your child suffer. I have seen mine suffer quite a bit and at 17 she is still suffering and struggling. I am writing simply to show this poem that I found when she was an infant and I still have it. It still hits home and brings tears to my eyes, but still lifts me up when I think I have had enough, brings me back from the "why me/or why my child" mentality, and makes me realize that every child is simply a blessing no matter what the struggle. I hope it helps you as much as it helps me.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.