Request for Question Clarification by
pafalafa-ga
on
07 Mar 2005 09:29 PST
kdw16-ga,
There doesn't appear to be a lot of information available on doctors
with a specific history with this disease, but I did find a few leads
that might be of use:
==========
Several doctors are listed on this site with interest and involvement
in a number of conditions similar, in some respects, to Ehlers-Danlos:
http://www.potsplace.com/physicians.htm
Illinois
Dr. Janice Gilden
Finch University of Health Sciences
The Chicago Medical School
3333 Green Bay Road
#111E
North Chicago, IL 60064
847-688-1900 x84574
POTS, NCS, PAF/Secondary Autonomic Failure/MSA, Diabetes, Mitral Valve Prolapse
Autonomic Laboratory
Dr. Gilden can also be seen at:
RHC/St. Mary of Nazareth Hospital Center
2233 W. Division Street #200
Chicago, IL 60622
312-770-3455
Dr. Todd Davis
Children's Memorial Hospital
2300 Children's Plaza
Chicago, Illinois 60614
773-880-3820
Treats Children
Comments submitted by a patient:
Dr. Davis is not only one of the most caring doctors you could ever
interface with, but he is one of the most thoughtful humans I have
ever met. He is not willing to give up and continues to seek solutions
and alternatives.
[And here's one with a specific history with E-D, though not in the
cities you asked about -- still, you may want to give them a call for
a referral]:
Washington, DC
Dr. Alan Pocinki
2141 K St. N.W.
Suite 606
Washington, DC 20037
202-223-2282
POTS & NCS
Primarily sees patients that have orthostatic intolerance as a feature
of another syndrome, such as CFS, Ehlers-Danlos and related
hypermobility syndromes.
==========
This doctor at Washington U in St Louis co-authored a paper on E-D:
http://wuphysicians.wustl.edu/physician2.asp?PhysNum=3064&deptID=10&divisionID=0
Department of Pediatrics
Dorothy Katherine Grange, M.D.
A patient with Ehlers-Danlos type VI is homozygous for a premature
termination codon in exon 14 of the lysyl hydroxylase gene. Molecular
Genetics and Metabolism 1999; 67:74-82
==========
And of course, this group might be able to offer some referrals or suggestions:
Ehlers-Danlos National Foundation (EDNF)
The foundation serves people with or interested in Ehlers-Danlos
syndrome (EDS) and medical professionals who treat EDS. It aids
networking among members for communication and support and maintains a
library of educational materials.
3200 Wilshire Blvd., Suite 1601, South Tower
Los Angeles, CA 90010
Phone: 213-368-3800
Fax: 213-427-0057
E-mail: staff@ednf.org
Web site: www.ednf.org
==========
Let me know if this information is useful to you, and how else we can
assist you on this.
Thanks...and all the best,
pafalafa-ga
