[Congressional Record Volume 152, Number 89 (Tuesday, July 11, 2006)]
[Extensions of Remarks]
[Pages E1366-E1367]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                 INTERNATIONAL GAUCHER AWARENESS MONTH

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                           HON. BARNEY FRANK

                            of massachusetts

                    in the house of representatives

                         Tuesday, July 11, 2006

  Mr. FRANK of Massachusetts. Mr. Speaker, once again I want to call 
attention to the important work of the National Gaucher Foundation, a 
group of very dedicated people who are as they describe their work 
engaged ``in an ongoing endeavor to spread the word and help educate 
others about Gaucher Disease.''

[[Page E1367]]

September will be International Gaucher Awareness Month, and because it 
is important that people know more about this disease and how to combat 
it, I take the occasion to insert here an article from the publication 
Spotlight On Health that provides important information about this 
disease.
  Gaucher Disease predominately affects Jewish people of Eastern 
European descent--Ashkenazim--and the foundation notes that a large 
majority of those most susceptible to the disease remain unaware of it. 
This makes their work particularly important as part of our overall 
effort to give people the tools with which they can protect their 
health, and I ask that the article from Spotlight On Health about 
Gaucher Disease be printed here, in time for International Gaucher 
Disease Awareness Month.

                  Gaucher Disease: Learning the truth

       (NAPS)--A simple test could help diagnose and treat a 
     genetic disease that can cause severe debilitation. Yet nine 
     out of 10 people most at risk for the condition do not even 
     know it exists.
       The condition, called Gaucher disease, can affect all 
     people, but is primarily seen in Jewish populations of 
     Eastern European descent. The carrier rate for these people 
     may be as high as one in 15 and the rate of the disease in 
     the general population is believed to be about one in 100 to 
     200 people. If both parents carry the disease, the odds of a 
     child being born with it are one in four.
       Gaucher disease is passed down from parent to child and can 
     occur at any age. Signs and symptoms can include:
       Fatigue
       Unusual bruising
       Bleeding episodes
       An enlarged abdomen
       Bone pain.
       Although the disease can be devastating, it can often be 
     managed. However, people must first be aware of the 
     condition, which many are not. ``A survey showed that 90 
     percent of the Jewish population is unaware of Gaucher 
     disease. That means many people may be symptomatic and have 
     no idea that they even have the disease,'' says Rhonda 
     Buyers, National Gaucher Foundation Executive Director. ``The 
     good news is that, unlike other genetic conditions, Gaucher 
     disease is treatable and can be diagnosed with the use of a 
     simple blood test.''
       Buyers says that lack of awareness about Gaucher disease 
     extends to physicians as well. In fact, a survey found that 
     four of five blood specialists suspected leukemia or lymphoma 
     when presented with the signs and symptoms of Gaucher 
     disease.
       Her group is working to change that. Not only does The 
     National Gaucher Foundation fund research intended to cure 
     Gaucher disease, it also works to promote physician and 
     community awareness about the condition (September is Gaucher 
     Awareness Month). At the same time, the foundation helps meet 
     the needs of patients and families affected by Gaucher.
       People interested in information on Gaucher disease testing 
     or who want to learn more about the disease's symptoms can 
     visit the group's Web site, www.gaucher disease.org.

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