1. < Blood Cancers & Disorders

Are there bloodless treatments for alpha thalassemia?

Posted by chiplane2 @chiplane2, Jan 8 12:09pm

From the time my daughter was 8 years old, specialist were blowing off certain issues of her blood test. It was 8 more years, 3 specialists, from 2 different states and we got nowhere. Finally, my wife told the doctor about what she had researched about thalassemia, and the doctor basically told us we didn’t know more than he did, and proceeded to tell us that it is a disorder that normally affects those from the Mediterranean, and all he saw was a black American girl and never considered her genetic history. Eventually he decided to test for it and a week later was apologetic as he told us that my daughter had alpha thalassemia.

For the next several years, nothing was done about it. The doctors did not tell us about any treatments or if a change in diet or lifestyle would benefit her. Nothing! We found out that transfusions were the norm for treatment, but my daughter refuses to take blood. Now she is 26 years old and has never been able to hold down a job longer than a few months because she has no energy. Her quality of life has diminished.

Is there a treatment or even a trial of something other than blood transfusions to possibly help her?

We currently live in Malaysia (we have been out of the country for over 4 years now. Her latest blood test shows her blood type changed from B positive to O positive. The doctors here are concerned about leukemia or something else. She is still very tired most of the time, but this change in blood type is very scary. Is that common for those who have this disorder?

So many unanswered questions. We are considering moving back to the states and are looking in areas that offer bloodless medicine. Any suggestions about any of this would be greatly appreciated. Thanks for your time.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 8 1:47pm

Hi @chiplane2 I’d not heard of alpha thalassemia before so I did a little quick research before responding to you. It appears to be an inherited blood disorder that causes the body to have less hemoglobin than normal. Hemoglobin enables red blood cells to carry oxygen. Thalassemia can cause anemia, leaving a person fatigued. So that explains why your daughter is so fatigued all the time and why her doctors would like to give her a blood transfusion. It could help her immensely to regain some normalcy to her life.

At this time there are limited treatments for this condition but the predominant treatment is blood transfusions. If there’s an overload of iron in your daughter’s blood, there is chelation therapy which removes excess iron and I’ve read that having the spleen removed may also benefit a patient with this condition. However, a stem cell transplant, (bone marrow transplant) is also one of the treatments available which would potentially allow your daughter to not face a life of blood transfusions.

You certainly do have a lot of unanswered questions. If you’re considering coming back to the states, I’d really suggest having her seen at a larger teaching hospital/clinic such as one of the Mayo campuses or the like. If you’re interested in Mayo, here is a link for you to request an appointment: http://mayocl.in/1mtmR63

Here are some informational links regarding Alpha Thalassemia
https://www.mayoclinic.org/diseases-conditions/thalassemia/diagnosis-treatment/drc-20355001
~~

https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995?p=1
~~
https://medlineplus.gov/genetics/condition/alpha-thalassemia/#inheritance

As for changing blood types, no it isn’t possible on its own to have a body change its blood type. However, with a stem cell transplant that is possible. I went through that process and my blood did change from my birth type of B positive to that of my stem cell donor to O positive.

So, I’m not sure what to tell you about your daughter’s blood type except before anyone gives her blood, if she decides to have a transfusion, they’d better make sure every thing is typed and crossed so that she doesn’t have a negative reaction. I’ve had many transfusions while going through my leukemia treatments and the nurses are extremely thorough with making sure everything matches before transfusion. So I really wish your daughter all the best with everything that’s happening.

Testing for blood type isn’t a common procedure unless there’s going to be a transfusion of blood. How did her doctor’s discover her blood type was different?

REPLY
1 reply
chiplane2 | @chiplane2 | Jan 12 9:43am
In reply to @loribmt "Hi @chiplane2 I’d not heard of alpha thalassemia before so I did a little quick research..." + (show)
@loribmt

Hi @chiplane2 I’d not heard of alpha thalassemia before so I did a little quick research before responding to you. It appears to be an inherited blood disorder that causes the body to have less hemoglobin than normal. Hemoglobin enables red blood cells to carry oxygen. Thalassemia can cause anemia, leaving a person fatigued. So that explains why your daughter is so fatigued all the time and why her doctors would like to give her a blood transfusion. It could help her immensely to regain some normalcy to her life.

At this time there are limited treatments for this condition but the predominant treatment is blood transfusions. If there’s an overload of iron in your daughter’s blood, there is chelation therapy which removes excess iron and I’ve read that having the spleen removed may also benefit a patient with this condition. However, a stem cell transplant, (bone marrow transplant) is also one of the treatments available which would potentially allow your daughter to not face a life of blood transfusions.

You certainly do have a lot of unanswered questions. If you’re considering coming back to the states, I’d really suggest having her seen at a larger teaching hospital/clinic such as one of the Mayo campuses or the like. If you’re interested in Mayo, here is a link for you to request an appointment: http://mayocl.in/1mtmR63

Here are some informational links regarding Alpha Thalassemia
https://www.mayoclinic.org/diseases-conditions/thalassemia/diagnosis-treatment/drc-20355001
~~

https://www.mayoclinic.org/diseases-conditions/thalassemia/symptoms-causes/syc-20354995?p=1
~~
https://medlineplus.gov/genetics/condition/alpha-thalassemia/#inheritance

As for changing blood types, no it isn’t possible on its own to have a body change its blood type. However, with a stem cell transplant that is possible. I went through that process and my blood did change from my birth type of B positive to that of my stem cell donor to O positive.

So, I’m not sure what to tell you about your daughter’s blood type except before anyone gives her blood, if she decides to have a transfusion, they’d better make sure every thing is typed and crossed so that she doesn’t have a negative reaction. I’ve had many transfusions while going through my leukemia treatments and the nurses are extremely thorough with making sure everything matches before transfusion. So I really wish your daughter all the best with everything that’s happening.

Testing for blood type isn’t a common procedure unless there’s going to be a transfusion of blood. How did her doctor’s discover her blood type was different?

Jump to this post

Being in Malaysia, they did a general blood test and it came back O positive, but she has always been B positive. They did another check and it is O positive now. She has never had a transfusion or bone marrow transplant or anything like that. We learned that certain infections can cause it or other blood issues like leukemia.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 12 10:04am
In reply to @chiplane2 "Being in Malaysia, they did a general blood test and it came back O positive, but..." + (show)
@chiplane2

Being in Malaysia, they did a general blood test and it came back O positive, but she has always been B positive. They did another check and it is O positive now. She has never had a transfusion or bone marrow transplant or anything like that. We learned that certain infections can cause it or other blood issues like leukemia.

Jump to this post

The blood type issue is…well, just unusual. From my understanding, and with opinions from two friends who are physicians (one is a hematologist) blood types don’t change spontaneously. There is ongoing research for potentially change blood types but nothing available now. It can and frequently does happen with a bone marrow transplant. So your daughter’s changing blood type, without SCT/BMT, is certainly an anomaly.
And actually, a bone marrow transplant may be an option for your daughter’s medical condition.

But again, from my understanding, blood cancers and infections don’t cause a change in blood type. They can alter the shape and health of blood cells or alter the production rate of blood cells but not change the blood type.

I hope you’re able to find treatment for your daughter. At this time blood transfusions are one of the key factors in helping her stay healthy and gain strength. Have you given any more thought to coming to the US to have her examined and a second opinion?

REPLY
1 reply
chiplane2 | @chiplane2 | Jan 12 10:09am
In reply to @loribmt "The blood type issue is…well, just unusual. From my understanding, and with opinions from two friends..." + (show)
@loribmt

The blood type issue is…well, just unusual. From my understanding, and with opinions from two friends who are physicians (one is a hematologist) blood types don’t change spontaneously. There is ongoing research for potentially change blood types but nothing available now. It can and frequently does happen with a bone marrow transplant. So your daughter’s changing blood type, without SCT/BMT, is certainly an anomaly.
And actually, a bone marrow transplant may be an option for your daughter’s medical condition.

But again, from my understanding, blood cancers and infections don’t cause a change in blood type. They can alter the shape and health of blood cells or alter the production rate of blood cells but not change the blood type.

I hope you’re able to find treatment for your daughter. At this time blood transfusions are one of the key factors in helping her stay healthy and gain strength. Have you given any more thought to coming to the US to have her examined and a second opinion?

Jump to this post

Yes. Especially with more bloodless medicine centers there and in the UK. We have already been speaking with a few of them. We just need to decide on where and when.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jan 12 10:24am
In reply to @chiplane2 "Yes. Especially with more bloodless medicine centers there and in the UK. We have already been..." + (show)
@chiplane2

Yes. Especially with more bloodless medicine centers there and in the UK. We have already been speaking with a few of them. We just need to decide on where and when.

Jump to this post

I really hope you can find a solution for your daughter. I’d love to know what you find out and it would be really helpful for others suffering from alpha thalassemia. My best wishes to you and your daughter on this journey. Will you keep in touch please and let me know what information you find out?

REPLY
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