Want your support to help inform others

Hi Guys & gals...
I decided to google "Thalassaemia" in new zealand only and just see what I come up with.
I found a site www.emedinews.com
I have found one posting regarding Thal which was just informing of the different types of Thal.
I have joined and hope to make Thalassaemia more known, especially here in New Zealand.
I hope that you guys will support me and help me with what ever questions I may be asked.
Today I answered a question put to me....
Hi,
One of my friends has thalasemia disgnosed in childhood. But she was told that she only has thalassemia minor. But recently, she frequently complains of lethargy and low energy.
May I know what she can do besides resting so that she can feel more energetic?

When I become lethargic it usually means that I'm....
1. due for a blood transfusion
2. my iron levels are too high
3. ive not well
Theres only one thing that I can do for myself and that  is to take it easy while taking my medicines.
But that's me. I would suggest that your friend goes back to her GP and explain her symptons.
She may need to see a haemotologist in regards to her Thalassaemia.

Below is a copy I took from a Thalassaemia site. Hope this helps.
But for more info log on to Thalpal.com

Thal minor can range from silent carrier status with no symptoms to transfusion dependency in rare cases of the dominant thal gene. There has been very little research into the health of thal minors and as a result, most doctors are unaware that it can have symptoms that adversely affect quality of life. In your case, if you do have it, it would be called silent carrier. The main danger here is for future generations so getting a diagnosis is very important.
While there has been little research into the effects of thal minor, we have many members who are minors and have repeatedly testified to health conditions that are all very similar. The common thread beyond minor is that the lower the hemoglobin level, the more symptoms that are experienced. You will find very few doctors who will acknowledge that thal minor can affect one's health, but we do hope that patients will also tell their doctors so that doctors can become better informed.  
I really hope this helps.

Is this ok? I really value your inputs  

Hi,

That's a nice way to start things off. It would be better if you tell them to get properly tested as the symptoms vary from case to case. Furthermore it's not necessary that Iron overload causes lethargy; as a matter of fact this person could be low on Iron and therefore suffering from Iron deficiency anemia (which can happen in Thal. Minors)

I'd recommend this person to get the Complete Blood Picture done along with the Serum Ferritin test. If he/she is low on Iron and Hb then that can be cured by diet and healthy lifestyle. If the Hb. is low and S.F is normal then an electrophoresis can further clarify the Thal. Minor situation.

You did a good job and referring them here so that they can learn more and meet similar people is a great idea! Good going!

We have an extensive post about the various types of thalassemia, including thal minor at http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0  There are also suggestions on how to improve one's energy level and health in this post. Many minors suffer from fatigue and other assorted symptoms. Use of natural hemoglobin inducers like wheatgrass and resveratrol may be of some help in raising Hb.

By the way, we do have another member from New Zealand, Akkro13, whose son is a major.

Thank you Sajid & Andy 

I am finally learning that there are more NZers with it and I have been contacted with one who saw my postings here on your site which makes me feel less lonely.
But there still is not enough info on it unless the doctor is willing to read up.
From my dealings with the medical professionals I am told regularly that they don't know much about it or they ask me what is it.
A common question I get asked is "When did you get it?" or "How did you get it?"
I always thought they were asking which parent had it but no they honestly thought I got it later than conception.
I know there are people here who have the trait, but there is not much info about it and so I am hoping that I can make people aware by getting them to check out this website

@cherian
hi cherian i found it .... i think it will b ur friends problem ...read it carefully..

@ Andy correct me if i m wrong ..........

The Spleen

  

[[bgcolor=#ffff00] http://www.thalassemia.com.pk/index.php?kb=chapterii

SECTION 3
Thalassemia Intermedia
Chapter II
Particular Problems in Thalassemia Intermedia
                 

Sometimes the spleen gets gradually bigger and the anemia gets gradually worse as the years pass. Finally some patients with thalassemia intermedia start to need transfusions. When that happens, removing the spleen often brings the situation back to what it was earlier in life. The anemia gets better, so some people can stop transfusions again after splenectomy.[/bgcolor]
        [bgcolor=#ffff00] Sometimes a mild thalassemia intermedia causes very little trouble in the first few years of life, so that no-one notices that there in anything wrong with the child. But then the spleen may get bigger and make the thalassemia worse, and the diagnosis is made rather late. By this time the thalassemia intermedia may look like thalassemia major, because the spleen is making it worse, and the child may be started on regular transfusions. This is why we alays wonder whether it is thalassemia major or thalassemia intermdeia, when a child with a big spleen starts to need transfusions for the first time, after 4 years of age[/bgcolor]. Ocassionaly, someone who really have thalassemia intermedia with a big spleen, who has been on regular transfusions for years, has their spleen taken out. After the operation, they may find they can manage without transfusions. This does not happen often. You may have heared stories of people who were "cured" by having their spleen taken out. This is the explanation of such cases. Splenectomy on its own does not improve thalassemia. It is helpful only if the spleen is making the thalassemia worse that it would be otherwise.


How do you know if your spleen is causing trouble and needs to come out?
         The best way to follow what the spleen is doing in thalassemia intermedia, is to keep a regular record of your hemoglobin level and growth over the years.
         In thalassemia Intermedia, your hemoglobin level falls gradually below the normal in the first 3 to 5 years of life. After that, in most cases, it remains more or less constant.
         At this point it is important to explain exactly what a hemoglobin level means. Very many things can affect the measurement. Such as the temperature of the room when the sample is taken, details of the method of taking the sample, and whether it is comes from a finger prick or from vien. These variations alone can make a difference of as much as a gram in the result. Also, your real hemoglobin level usually falls about a gram. Therefore, when you talk about your real hemoglobin level, it must be the average of several measurements taken some weeks apart. This is why we say people with thalassemia intermedia must have their hemoglobin measured at least 4 times a year. Then, if you keep a careful record of the measurements, you can see if your average hemoglobin level is changing from one year to the next.
         The commonest cause for a steady fall in your hemoglobin level over the years, is gradually-developing hypersplenism. However, we do not recommend removing the spleen simple because your hemoglobin level is a bit lower than it used to be. It is only worth having the operation if you fele unwell, or there are other problems. For Instance. an over-active spleen can slow down you growth-rate. This is one reason why it is important to keep a growth-chart.

I don't think Cherieann's friend would be classified intermedia. Most likely minor, and as we see over and over, many minors find their condition worsens with age but it doesn't become transfusion dependent, nor does the spleen enlarge considerably.

Thanks nice friend, but all I was told was that this person has Thal minor when she was diagnosed and now years later she is always tired.
All I can do at this stage is encourage her to see her GP, and a haematologist.
And to check out this site.
As I haven't been email again, I'm hoping she is seeking professional advice.

hi cheriean :
i m sending u the contact detail of haemotologist at california institute of thalassaemia childern hospital .....
he is a well know dr .

ELLIOTT P. VICHINSKY, MD
Specialty: Pediatric Hematology/Oncology
Gender: Male
 
Primary Office
Pediatric Hematology Oncology Medical Group
747 52nd St
Oakland, CA 94609
Phone: (510) 428-3377
Fax: (510) 601-3916

 
Personal
Selected Personal Achievements
Listed in Best Doctors in America, 2007 (Best Doctors, Inc.) 

Thanks Nice friend.
I have jotted down the details.
My only question is ... if hes a pediatrition thats for children & not adults?
There is only me who is getting treated at the hospital where I go, but I will give the details to my haematologist for future reference.
Thank you for your time, I really appreciate it

Dr Vichinsky is one of the top thalassemia specialists in the world, and I have the utmost respect for him and his work.  Both children and adults are treated for thalassemia at Oakland Children's Hospital.  As I recall, Jean has seen him in the past. In the US, adult thalassemia patients are often treated at Children's hospitals.

Thank you for the information Andy.
Maybe I will fundraise to go see him, or at least correspond with him through my specialist.
Thanks for the update guys.
I really appreciate the time you give.

Hi everyone
Thought I'd send you this message I received from emedinews.
Hi there,

Nice to have you in eMediNews. I am glad to see your effort in enriching our Thalassemia Support Group section.  For your information, eMediNews Medical Forum is just few-month old and we need dedicated members like you to bring life to this forum hence to make this forum the place for online discussion on various health issues.

I will appreciate if you can continuously share with us various aspects of thalassemia especially your personal experience. Please do consider joining our board of administration by becoming the first moderator for our Thalassemia Support Group section.

My warmest welcome to you!

Dr TKA; MBBS
Administrator,
eMediNews Medical Forum

I can't believe this. I'm quite chufted about it but scared as well.

I've no idea what to say but this was my reply.....

Thank you for your letter which I am truly honoured to have received.
I acknowledge that you would like to hear of my experiences but as I'm not sure where to start or what parts you want to know, I would like to leave it up to the members to ask their questions and I will answer as best as I can.
As for the joining your board of administration, I'm not entirely sure what that means.
I will continue to do what I can in getting any information available and hopefully continue with answering any questions as best as I can or redirecting to what resources I have available.

Thank you once again for your acknowledgement.

 
I'm so happy for you.

I'm sure that more people will benefit from your contribution to that site and spread the awareness about Thal. on that site among the people who don't have Thal.

I know what you mean and thanks for believing in me.

I told my husband last night

his reply was...."They don't want you, just your brain"
That certainly bursted my bubble until I realise he was just being cheeky.

Hi guys
Just wanted to let you all know that I have managed to post topics and get information out about Thalassaemia and Thalpal on www.emedinews.com

I want to ask is it thief if I copy some of topics and information to inform others on emedinews?