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From: | |
Reply To: | Harold F. De Bruyn |
Date: | Sun, 2 Jul 2006 22:22:32 -0400 |
Content-Type: | text/plain |
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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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