Question

[alexandra7]

Hello everyone!I posted some messages a few month ago and I really appreciated the help I got .For the new members I ‘d like to introduce myself again.My name is Alexandra and I am from Bucharest Romania . At first I thought I had MDS.Well the doctors can’t tell me exactly what is wrong with me. My hematologist says it’s syderoblastic anaemia.I have tryed so hard to understand what this means. I have so many questions that don’t have an answer.For example I have 0,77 blasts .How bad is this.Doctors say I will live up to 60 years . Is this true? Mom says I can’t have a baby which is something I can not accept. Why did I get this ?What could have caused it?I was recomanded to take iron tablets and now I have too much iron that is not used by my marrow. Can anybody help me find something?Has anybody got better from this? Am I condamned to live a life without joy? Please if anybody knows anything I would be so greatfull to find somethig.So far I’m taking 2 tablets of B6 every day but no spectaculous results although I’ve come from a hemoglobin of 7 to 9,6 . So should I be hopefull or this is just a matter of time until I get worse?My palets are 180.000 and I never had problems with them .Thank you all .

[Neil]

Hi Alexandra,
Welcome back—but wish the circumstances were better.
Use the following link it can answer some of your questions.
Have you ever tried Procrit or Aranesp? Both boost red counts.

http://www.healthatoz.com/healthatoz/Atoz/ency/sideroblastic_anemia.jsp

[lindajo]

Hi, I think what we call it here is refractory anemia with ringed sideroblasts(RARS).It is a type of MDS under the FAB(French American British Classification). It is also called that under the WHO(World Health Organization) . Usually these patients have the least side effects and a longer prognosis or life span.

I know of several women patients that had children that were born healthy and their pregnancy is how they found out that they had MDS.

I didn’t find out I had MDS until later, but now I think I had the disease long before I was diagnosed. I am not sure that you should let your Mom or any doctor decide whether you should have children or not. I definetly wouldn’t recommend it and I won’t get pregnant again, but I don’t think enough is known now for anyone to say you can’t.

It might be better for someone else to carry your child for you. Here we call it surgate motherhood. Your egg and your husbands sperm is fertilized and then implanted in a woman who is healthier and can carry the baby to term for you. Do they have that in your country?

You probably can’t pass the disease on to your child but that risk is still relatively unknown.

It is a matter of time before you get worse, but it could be years. There are many new promising treatments that could change everything before then. Also over the past 15 years I have had several times of extreme crisis but then I have returned to a manageable level.

You don’t say how old you are. I was 29 when I initially got sick, I got better after 1 1/2 years but every time I try to return to working I get worse. As long as I can rest when I need to I do o.k.

Try not to worry. Eat healthy and work on learning as much as you can.

[alexandra7]

Hello again and thank you for everything.I found on the page Neil reccomanded something “Acquired sideroblastic anemia may be cured when the condition that causes it is treated or removed.”But so far for me nobody knows why I have it .I did tests both in Romania and Paris but they couldn’t tell me what the cause is nor if I have it because something caused it or I inheretede it.So far I know that in my family there has never been such a case.I would like to know if there is a certain test I should have or if this could have been caused by a Staphylococcus .I starting having problems exactly after having dicovred I had this infection.A class mate had this and I might have took it from her 3 years ago. After the treatment I ‘ve come to discover that when I have a cold or the flue I don’t have high fever any more .But I have the test for Staphylococcus every month and sometimes it reappears. And to answer some of lindajo’s questions I am 21 but I found out about this anaemia 3 years ago at 19 . And yes we have surgate motherhood here.And I thing this is a good ideea that I hadn’t taken into account. I am not yet married but my only wish in life is to have a nice healthy child. Thank you again for the info

[Author]

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