Hi my name is Winnie

  • 6 Replies
  • 7069 Views
Hi my name is Winnie
« on: August 04, 2011, 08:33:21 PM »
I am so glad to have found this forum. Where I live it has been very difficult to find other "thals" and doctors who know what they are doing.  I was  diagnosed with Alpha Thalassemia trait about a month ago. After a more extensive workup with a specialist out of state, I suspect that it is more severe than that.  (I have had several blood transfusions in the past 6 months--getting a 7th tomorrow.)  It's been particularly helpful to read posts by older folks.

I just turned 40 years old. I have 4 children and a wonderfully supportive husband.  I'm cautiously optimistic that I will feel better with the correct treatment (I had been on iron therapy for 8 years)

If there is anyone who also found out about their condition later in life, i would appreciate hearing how you've coped wih the news.

Also, I am very interested in hearing more from anyone with two alpha-thal trait parents. Still searching the old posts...

Thanks!

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi my name is Winnie
« Reply #1 on: August 05, 2011, 01:57:26 AM »
Hi Winnie,

Prior to your recent history of transfusions, did you ever need transfusions before? You mention 8 years of iron supplements. This is useless for alpha thalassemia. The anemia is caused by a lack of alpha globin and cannot be affected by iron and long term iron supplementation can damage the organs, so it should be avoided. Do you have a long history of anemia? Will you be getting a DNA analysis to properly diagnose what type of alpha thal it is?

There are foods, drugs and chemicals that can cause hemolysis in alpha thalassemia, although it is not proven to happen with trait, but is known to occur with HbH disease. You can see some of these in a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830  The main food cause is fava beans, and the condition is called favism. The sudden hemolysis will destroy red blood cells, quickly dropping the hemoglobin level. Check the list and see if anything you've been exposed to might have caused hemolysis. I have even heard a report from on person, whose hemolysis was caused by the chemicals in fabric softener dryer sheets. Chemical fumes in general should be avoided.
Andy

All we are saying is give thals a chance.

Re: Hi my name is Winnie
« Reply #2 on: August 05, 2011, 10:40:18 PM »
Hi Andy-

Thanks for your response.  I had 2 blood transfusions in the past. The first time was when it was discovered how anemic I was. They found that I had/have zero iron stores left; my hemaglobin was at 4.  The next time was after I had a c-section for my last child. Starting in December of last year, I have had a blood transfusion about every 60 days.  Today, I had a transfusion after having one only 2 weeks ago. Quite frankly, my hematologist doesn't know what else to do but keep my numbers up until I get to Cornell in September. 

I have requested an MRI as soon as possible, just to see if there isn't something going on with my internal organs.  My intuition tells me that my liver and kidneys at least are working very hard.  I am extremely sensitive to strong chemical smells, medications, and foods that aren't very simply prepared or raw.  I've had these sensitivities my whole life, and anemia as well.  Before having kids, my hemaglobin was low, but not alarmingly so. I was just told to take multivitamins with iron and up my protien intake.

The chemicals you list do not sound familiar to me. In what form are they commonly found?  I'm willing to try anything to stay as healthy as possible! 

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi my name is Winnie
« Reply #3 on: August 06, 2011, 12:49:09 AM »
You should have a DNA analysis done to determine your genetic status. It sounds very much like you have Hbh disease, which is a 3 gene alpha deletion, or perhaps even Constant Spring, which would explain the extremely low hemoglobin level. It is possible that exposure to any chemical fumes can cause hemolysis. One common chemical is found in moth balls. It would be wise to avoid chemicals in things like laundry detergents, fabric softeners, skin soaps and shampoos. You should also watch to see if any other beans and legumes cause a drop in Hb level.
Are you going to Cornell in NYC? If so, they are experts on thalassemia there and should be able to answer all your questions.
Andy

All we are saying is give thals a chance.

Re: Hi my name is Winnie
« Reply #4 on: August 06, 2011, 01:11:27 AM »
Should a regular geneticist be able to do the DNA analysis, or does it have to be someone within the hematology field?

What you are saying rings true. On the one hand, it's scary to know that I have gone this long getting the wrong treatment but then I'm hopeful because I've made it to 40 years old! 

Yes I'm seeing Dr. Giardina at Cornell. I am compiling my list of questions right now. I also found a thalassemia best-practices paper from an Oakland hospital I think.  Still, I've found more useful information here than anywhere else online.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Hi my name is Winnie
« Reply #5 on: August 06, 2011, 05:56:08 PM »
Dr Giardina will be able to order and interpret any needed tests. Ask her if a DNA analysis would help to understand your condition. The hospital in Oakland, with the thal center run by Dr Vichinsky is an excellent hospital and along with Cornell, are Centers of Excellence, the best places for thal treatment in the US.
Andy

All we are saying is give thals a chance.

Re: Hi my name is Winnie
« Reply #6 on: August 07, 2011, 05:57:52 PM »
That's very good to hear. Thanks Andy!

 

SMF spam blocked by CleanTalk