Living With Disabilities/Expert Profile


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Expertise

I can answer questions related to coping with Ehlers Danlos Syndrome including: bracing, symptoms, alternative therapies, support groups, etc.

Experience in the area

Although I am not a doctor, I have extensive experience in dealing with EDS from personal experience and from being actively involved in EDS Support and Education groups since 1994.

Organizations
EDS Today, Canadian Ehlers-Danlos Association, UK EDS Support Group.

Organizations

EDS Today, Canadian Ehlers-Danlos Association, UK EDS Support Group.

Publications

EDS Today. I am both a writer and editor for the publication.

Education/Credentials
I have a BA in Business Administration/Accounting and an MBA in Business Management/Information Systems. I work in the medical field with 12 years experience in over-the-counter bracing and support products. In 2007, I joined a medical technology company.

Education/Credentials

I have a BA in Business Administration/Accounting and an MBA in Business Management/Information Systems. I work in the medical field with 12 years experience in over-the-counter bracing and support products. In 2007, I joined a medical technology company.

What do you like about this subject?

I have Ehlers-Danlos Syndrome and I like helping others cope with EDS.

What do you still hope to achieve/learn in this field?

I hope to continue to learn about new research in EDS.

Something controversial or provocative about this subject

EDS often goes undiagnosed or misdiagnosed due to lack of awareness by the medical community.

Average Ratings

Recent Reviews from Users

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    K = Knowledgeability    C = Clarity of Response    T = Timeliness    P = Politeness
UserDateKCTPComments
liz02/06/0910101010thanks for the reply. It seems though .....
Deanna12/28/081010Thanks for the help! I'll look into .....
Sirpa08/24/0810101010Thank you for your prompt reply!
Mike07/20/0810101010Thank you so much Barbara for your .....
Amy04/22/08101010Thank you for your responce. I plan .....

Recent Answers from Barbara Uggen-Davis

2009-02-04 EDS:

This sounds like it could be EDS. EDS type III, now called Hypermobile type EDS, is diagnosed with a clinical exam - if the doctor thinks the symptoms fit, you get a diagnosis, but there is no biochemical

2009-01-21 Ehlers Danlos Syndrome:

I don't know much about specifics of root canals, although I know several people with EDS who have had them, including my father. Best thing to do is ensure your dentist knows EDS and the possible risks

2009-01-09 EDS question:

Check into the department of vocational rehabilitation. DVR provides accommodations to help her get assistance for going to school or working. As for getting disability, the best advice I can give is

2009-01-08 referral of doctor in phoenix area:

I am not in the Phx area and don't know of any docs there, but I do know someone with EDS who lived in the region awhile back. She's on vacation right now, but when she gets back, I can ask her for a

2008-12-28 Ehlers-Danlos Syndrome & Surgeries:

Most doctors are clueless about EDS. Your best bet to find a doctor familiar with EDS is to ask for referrals from the CEDA (Canadian Ehlers Danlos Association) e-mail group. http://health.groups.yahoo

 

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