Hello to everybody..

[thog]

Some months I spent only reading here.

Now time has come to introduce myself to all you people.

Please forgive me if my English comes to you with a light German accent. I'll do my very best to be understandable.

1947 I was born in Berlin (now again the capital of Germany).
I am blessed with three lovely children, two daughters and a son.
33 years of my live I spent with the German Air Force as a career officer and retired as a Coronel in 2000.

With the thal deseases I am engaged since the year 1976, when I had to coordinate blood donations from a German military hospital, for people stricken with thal major on the mediterranean island of Serdegna.

In 1995 we started the "Deutsche Thalasaemiehilfe e.V." (= thog = association of German relief to thal people). This association intended to bring help to thal people in Serdegna and in Germany.
Because there were so many requests for information and help also from other countries, my younger doughter and me together with 12 volunteers decided last September 2007 to start a new association, the "Thalassaemihilfe ohne Grenzen e.V." (i.e. Relief to Thal People without Frontiers).

One of our importants focusses is the prevention of thal deseases. This means to bring information to the people about the deseases and their decending on the next generations, before couples, with the genetic disposition to thal, would decide to have children or not.
But also we offer relief in severe cases of thal in cooperation with a respected bone marrow / stem cell transplantation center.

Sincerely

Jürgen M. Beith, President aka: thog

[marientina]

Thank you so much for joining! We look forward to hearing more of your stories and hopefully getting some advice or direction to people.

I know that immigration patterns have changed a lot in Germany and I am wondering how many more alpha thal patients you're dealing with.

In Los Angeles where I now live, we have a great influx of Southeast Asian people who carry thal and don't know it. California now has included thalassemia into postnatal screening and thankfully has two of the best treatment centers in the United States. The two biggest challenge these centers have is the following:
Finding thal patients who are not receiving adequate treatment and convincing their physicians they don't know what they are doing and must receive advice from a specialist. This is especially hard with asian families who have been faithful to their family doctor for long time or may not even have a western medicine doctors. Also very hard to convince some hematology/oncology docs that they aren't up to date with data and aren't giving the right treatment to their patients.

Finding the thal intermedia patients is hard. Hemoglobin H disease is the top problem here in California and also due to intermarriage, many strange alpha thal combinations have been born. I comb the journals and see so many new mutations reported whose clinical course is uncharted and I feel despaired. Many internal medicine docs who have never encountered these issues before tend to not know what to do. Often these patients have severe health problems after the age of 25-35 and by the time they find a specialist, they have received very inappropriate care.

This is the curse of 'orphan' disorders in the US and as you know, the US medical system is not 1st world quality throughout...We have some populations living in extreme urban and rural poverty, including here in California. It is a country of extreme contrasts, very different from the Greece I grew up in...

Do you have these problems in Germany and do you have any advice or insight to share with us?

[Pear]

Hello Jürgen,

It's nice to hear about your organisation!!
I am from the Netherlands so we are neighbours :)

[sgoh]

Hi Jurgen

Welcome to the forum. Actually, I'm also considered new in this forum. I joined this Forum in Jan this year. My name is Sylvia and works for a company called Resonance Health, provider of FerriScan - non invasive measurement for liver iron concentration.

You may have heard of this FerriScan service. Instead of conventional methods such as liver biopsy, serum ferritin, of measuring your liver iron level, you use a MRI-based technology called FerriScan to measure your liver iron concentration accurately.

Our FerriScan service has received regulatory approval in Europe (CE Mark) to be offered as a commercial service.

We work with thalassaemia support groups around the world, providing information and support on the FerriScan service. Please feel free to ask me any questions you have on FerriScan.

Once again, welcome ... :)

[thog]

Thanks for your warm welcome, Pear and sgoh!

The last weeks I was so busy preparing the contents of our future website. I hope that we can launch it in next september when our organisation will have its first anniversary. Time is horribly quick passing by.

I also started a highschool project to help advancing the public awareness of thal. The three classes of genetics (within the curriculum of biology) learned about thal and the consequences for the patients. Teachers and students called it a great success.

Now I hope that I will have a little more time available for this forums.

Thanks

Jürgen M. Beitjh aka: thog