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Subject:
From:
"Harold F. De Bruyn" <[log in to unmask]>
Reply To:
Harold F. De Bruyn
Date:
Sun, 2 Jul 2006 22:22:32 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

My husband has Refractory Sprue. This is diagnosed when even though  no 
gluten is eaten, severe malabsorption occurs. As several of the people 
who responded to my husband's earlier post did, a person may lose so 
much that they have to go on TPN ( feeding through a vein) and often 
may be at risk for Enteropathy Associated T Cell Lymphoma. Before a 
diagnosis is made all other possible causes are ruled out. Refractory 
Sprue is not a disease of children or young people. There is very 
little research going on in the United States because the incidence is 
felt to be very low. Many mature  people with Celiac Disease are  only 
now getting diagnosed. They may have had a  inflammation for a long 
time,  which may put them at risk for Refractory Sprue, which itself 
may be unrecognized.

Because the incidence is low,  it has not been identified as a priority 
by the funding and research communities. Researchers may feel it will 
be too hard to find a research population.  Medications have not been 
developed for Refractory Sprue, so often people take a medication which 
has been developed for other diseases.

  NORD is an acronym for the National Organization for Rare Diseases. It 
was developed in 1983 as an outgrowth of a unified effort by rare  
disease support groups to solve the problem  of the "orphan drug 
dilemma". I have  known about NORD for many years and had used NORD 
when,  as a school psychologist I had students with rare diseases. I 
thought,---  well,  even though Celiac has been shown to be one of the 
most common of the autoimmune diseases, Refractory Sprue/Celiac is 
thought to be very rare.  Why then, it  it should  be listed in the 
NORD list and database  of rare diseases? But,  It wasn't listed.

NORD is committed to improving the identification, treatment and cure 
of rare diseases.   NORD's premise is that because only a small number 
of patients suffer from any rare disease, no single disease specific 
group can assemble the resources to effectively address the  needs of 
the group.

I contacted NORD and found out how diseases were listed. It required an 
established authority to help write a report. I was referred to the 
person who handles such things and suggested Dr. Ciaran Kelly of Beth 
Israel Deaconess and also some other names.

  Refractory Sprue is now  on the NORD Data base, Dr. Ciaran Kelly wrote 
the report for Refractory Sprue.

  I have been working on a two pronged effort to help people with 
Refractory Sprue.

1. Help people interact and provide support  via a variety of avenues,  
informally and at no cost ( I had mention this in my recent posts.)

2. Link up with an organization which has been very effective and is 
knowledgeable, NOR. No cost for the listing and description. People can 
join for a small membership fee which they will reduce or eliminate if 
the cost is a problem.  You can now refer medical and other people to 
NORD for information about Refractory Sprue

To find out about NORD  see their   Web site,   http:// 
www.rarediseases.org.

There will be a part  with more about NORD.

Irma

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