Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

This was not a scientific survey.

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During the summer and early fall of 2000, our member Adele, conducted a survey. This survey was a first attempt to classify the symptoms that our members have experienced with Rombergs Syndrome. Of the approximately (145) active members, (45) responded to Adele's survey. Later Dr. Jon Stone of Scotland, did a clinical survey on the symptoms of Rombergs Syndrome using many of Adele's survey questions (see the link "Parry-Rombergs: A Clinical Survey" back on our Main Page).

Knowing the results of Adele's survey, helps us to recognize more fully the symptoms that can go along with Rombergs Syndrome. These results are based on the personal experiences of our members.

What follows is a paraphrase of Adele's November 14, 2000 e-mail, which she used to publish the results of this survey. Every attempt has been made to accurately reproduce these results for today's active membership.

We thank Adele for her efforts.

Sharing information is one of the objectives of the Romberg's Connection.


Date: 14 Nov 2000
From: Adele

Working on this survey was an incredible journey into the world of Rombergs. I want to thank all of you who have shared their stories and insights into this little known syndrome. I urge all the members of the Romberg's Connection to share this information with anyone who would listen in the medical community.

There were 45 survey responses so always bear that in mind when reviewing the results. If at times the numbers don't match, it is because I didn't get an answer for that particular question. The numbers tell a story about the lives of persons affected with Rombergs.

I want to personally thank Florencia and Howard for translating the survey questions into Spanish. They did a wonderful job.

Adele can be contacted at rombergs@hotmail.com for further information.

The results of this survey can be found at Survey Results.

This was not a scientific survey.

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Last Updated February 4, 2017