Newbie from the U.K

  • 3 Replies
  • 6026 Views
*

Offline Karis

  • *
  • 3
  • Gender: Female
Newbie from the U.K
« on: December 14, 2008, 02:57:27 PM »
Hi All
Firstly I would like to congratulate you all on such an informative and supportive forum. Well done!
I am so glad to have found this site, especially as I have been experiencing quite alot of frustration and confusion since my doctor told me my blood test results suggested i had an Alpha Thal trait, last week.

Now my frustration lies with my doctor for telling me, as an afterthought, that its only relevent if I had a baby with someone who also has an alpha trait which could result in a baby with a mild form of Thalassaemia! Well I had already done my homework and knew that the risk wasn't as irrelevent and mild as he was making out, so I gave up with getting info from my G.P, who obviously had limited knowledge on the subject and decided to source information elsewhere..... so here I am!

I am of english decent with no other known backgrounds in my family history. I suspect my trait comes from my grandmother who does have particularly olive skin, and my mother has microcytic, hypochromic (sp) red blood cells but that was put down to an iron deficiency.

Now my confusion comes from the un-interest from the G.P (and most g.p's in the UK as it seems) in confirming that it is an Alpha Thal trait. Am I correct in thinking that an Alpha Thal trait is not straight forward in diagnosing as it would require genetic testing to confirm? -which is obviously too expensive as a trait is "assymptomatic" (not my words).
Nothing was mentioned about informing other family members and nothing was advised about the possibility that i may have passed this trait to my sons......
You are told the diagnosis and then pushed out into the world to figure out what it all means and what to do about it!

Also I had a routine Thalassaemia screen when i was pregnant but because I was iron deficient the Thal was missed, I assume because I am not in a high risk Thal group the docs just ruled it out.
I'm also assuming my husband doesn't also have a trait as my sons age 2 and 3 seem perfectly healthy, but would it be wise for him to be checked anyway?

So for the ramble! So many questions......!!!

Thanks in advance  :wink
Karis

p.s I had the blood test in the first place because I was experiencing symptoms of Anaemia.... tiredness, breathlessness, palpitations, muscles feeling heavy, pallor - I think my iron level was 15 so it wasn't low, but nothing else has explained these symptoms until I read other thal minor experiences on here.

*

Offline nice friend

  • Thalassemia Major
  • *
  • 2836
  • Gender: Male
  • If I Can, Why Not You??... If I Can U TOO !!!...
Re: Newbie from the U.K
« Reply #1 on: December 14, 2008, 04:53:16 PM »
Hi Karis ,
 :urwelcome for the compliment that you passed abt froum ... its nice to hear from you , and to know about you ...
Quote
especially as I have been experiencing quite alot of frustration and confusion since my doctor told me my blood test results suggested i had an Alpha Thal trait, last week
no need to been frustrated anymore , we are here to help you ,  i dont know abt medical terms and symptoms but i know that others will help you to understand thalassemia ...
a welcome message for you were sent just before your post soo please check that here is the linnk ...
http://www.thalassemiapatientsandfriends.com/index.php?topic=2426.0

Best Regards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Newbie from the U.K
« Reply #2 on: December 14, 2008, 07:32:11 PM »
Hi Karis and welcome,

Alpha thalassemia is not easy to diagnose and the only sure way to know what your status is and how it can relate to your children is through DNA analysis. Please read the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1772.0 


While alpha carrier state may not affect your health, it can be passed on to your children and they need to be aware that if they do carry the alpha trait, that they should have any future partner tested before having children, as there is a danger of a more serious disorder if two alpha carriers have children. The worst case is when the child receives 4 alpha thal genes from the parents and the baby dies before birth. Education and awareness can prevent this so it is very important that your children be tested for carrier status.

You cannot rule out alpha thal carrier status in your husband without him being tested. However, it is unlikely that he is also a carrier, but not impossible. If you plan more children you may want to have him tested. As I said, the only sure test for alpha is a DNA analysis.
Andy

All we are saying is give thals a chance.

*

Offline Karis

  • *
  • 3
  • Gender: Female
Re: Newbie from the U.K
« Reply #3 on: December 21, 2008, 06:09:31 PM »
Thankyou for your replies. I look forward to reading peoples stories and experiences, and learning all about Thal.
Thanks Umair for the welcome message and Andy for the info on Alpha Thal, which was very helpful.

Karis  :wink

 

SMF spam blocked by CleanTalk