The Romberg's Connection 2009 Survey Results


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.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.



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These are the countries represented by the (143) people who took part in our 2009 Survey.
Australia
Australia (13)
Brazil
Brazil (1)
Canada
Canada (4)
Denmark
Denmark (1)
England
England (3)
Germany
Germany (5)
Guatemala
Guatemala (1)
Ireland
Ireland (1)
Israel
Israel (2)
Malaysia
Malaysia (1)
Netherlands
Netherlands (3)
New Zealand
New Zealand (2)
Romania
Romania (1)
South Africa
South Africa (3)
Spain
Spain (2)
Sweden
Sweden (1)
Thailand
Thailand (1)
England
United Kingdom (8)
United States of America
USA (90)
 
Number responding = 143 / percent responding = 100% of total respondents (143).


Table of Contents



The Romberg's Connection 2009 Survey was released to our members over the Internet on February 17, 2009. The Survey was closed March 11, 2009.

The Survey consisted of two hundred seventeen (217) questions over seven (7) topics. One hundred forty three (143) Connection members provided 14,420 answers to the Survey questions.

The Survey Questions can be downloaded and printed from here: 2009 Survey Questions

These Survey Results can be downloaded and printed from here: 2009 Survey Results

The purpose of this document is to report the answers provided by our members.

Our thanks go the following people who have contributed questions and/or suggestions to this survey: Dr. Foeldvari, Dr. Stone, Kristina, Markus, Margaret H., Margaret L., Pam, Terri, Lindy and Sally.

But most of all, our thanks go to the (143) members who took the time to particpate.

For more information about the Romberg's Connection, please e-mail us at:
rombergs@hotmail.com

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Page 8. I. General Information cont.: Who Is Affected
1. Please select who is affected (Required):
Affected
Person
Responses
(143)
% of Number responding
Yourself 102
71%
Daughter 21
15%
Son 18
13%
Mother 0
0%
Father 0
0%
Sister 1
0.7%
Brother 0
0%
Aunt 0
0%
Uncle 0
0%
Cousin (Female) 0
0%
Cousin (Male) 0
0%
Granddaughter 0
0%
Grandson 0
0%
Speaking for a Friend 0
0%
Spouse 1
0.7%
Other (Specify) 0
0%
Number responding = 143 / percent responding = 100% of total respondents (143).

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Page 6. I. General Information cont.: Person's Gender
1. Gender (Required):
Gender Responses
(143)
% of Number responding
Female 113
79%
Male 30
21%
Number responding = 143 / percent responding = 100% of total respondents (143).


Page 9. I. General Information cont.:
Affected Person Medically Diagnosed and Age?
1. Was the affected person medically diagnosed with Rombergs?
Diagnosed Responses
(142)
% of Number responding
Yes 132
93%
No 10
7%
Number responding = 142 / percent responding = 99% of total respondents (143).
This chart has a link to additional information.

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Page 9. I. General Information cont.:
Affected Person Medically Diagnosed and Age?
2. Was the affected person medically diagnosed with Linear Scleroderma?
Diagnosed Responses
(138)
% of Number responding
Yes 37
27%
No 101
73%
Number responding = 138 / percent responding = 96% of total respondents (143).


Page 9. I. General Information cont.:
Affected Person Medically Diagnosed and Age?
3. Which diagnosis came first?
Came First Responses
(117)
% of Number responding
Linear
Scleroderma
24
21%
Rombergs 93
79%
Number responding = 117 / percent responding = 82% of total respondents (143).

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Page 9. I. General Information cont.:
Affected Person Medically Diagnosed and Age?
4. What is the age of the affected person in number of years?
Age Responses
(143)
% of Number responding
70 - 74 3
2%
65 - 69 3
2%
60 - 64 4
3%
55 - 59 10
7%
50 - 54 14
10%
45 - 49 19
13%
40 - 44 8
6%
35 - 39 17
12%
30 - 34 10
7%
25 - 29 13
9%
20 - 24 4
3%
15 - 19 13
9%
10 - 14 11
8%
6 - 9 13
9%
1 - 5 1
1%
Number responding = 143 / percent responding = 100% of total respondents (143).

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Page 12. II. Rombergs Symptoms History
1. History of symptoms:
Age of the affected person when the symptoms started?
Age Responses
(137)
% of Number responding
67 1
0.7%
60 - 64 1
0.7%
50 - 55 1
0.7%
45 - 49 1
0.7%
40 - 44 2
1.5%
35 - 39 1
0.7%
30 - 34 3
3%
25 - 29 4
3%
20 - 24 7
5%
15 - 19 10
7%
10 - 14 31
23%
5 - 9 37
27%
1 - 4 29
21%
At Birth 4
3%
Unknown 5
4%
Number responding = 137 / percent responding = 96% of total respondents (143).

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Page 12. II. Rombergs Symptoms History
2. Are the symptoms still active?
Active Responses
(132)
% of Number responding
Yes 82
62%
No 50
38%
Number responding = 132 / percent responding = 92% of total respondents (143).
This chart has links to additional information.

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Page 12. II. Rombergs Symptoms History
3. Have the symptoms ever stopped and then started again?
Stopped
Started
Responses
(133)
% of Number responding
Yes 55
41%
No 78
59%
Number responding = 133 / percent responding = 93% of total respondents (143).
This chart a link to additional information.

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Page 12. II. Rombergs Symptoms History
4. Is the person facially affected on:
Facially
Affected
Responses
(127)
% of Number responding
Left Side 68
50%
Right Side 64
47%
Both Sides 5
4%
Not
Affected
0
0%
Number responding = 137 / percent responding = 96% of total respondents (143).

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Page 12. II. Rombergs Symptoms History
5. Where on the affected person's body do the symptoms also appear:
Person's
Body
Responses
(129)
% of Number responding
Left Side 30
23%
Right Side 23
18%
Both Sides 8
6%
Not
Affected
68
53%
Number responding = 129 / percent responding = 90% of total respondents (143).

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Page 12. II. Rombergs Symptoms History
6. Comments for Rombergs Symptoms History:
To read the (65) Comments Click Here.
Number responding = 65 / percent responding = 45% of total respondents (143).

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Page 16. III. Associated Symptoms of Rombergs (page 1 of 4)
1. Please select all that apply (page 1):
Symptoms Responses
(420)
% of Number responding
Abnormal sensation in affected area 65
48%
Atrophy (tissue loss) 131
96%
Blood pressure 10
7%
Bone loss 66
48%
Brain affected 27
20%
Chin affected 75
55%
Ear affected 46
34%
Number responding = 136 / percent responding = 95% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 25. III. Associated Symptoms of Rombergs (page 2 of 4)
1. Please select all that apply (page 2):
Symptoms Responses
(575)
% of Number responding
En coup de sabre (indentation) 92
71%
Eye affected 82
63%
Face affected 118
91%
Fasciculation (muscle twitching) 41
32%
Fatigue 42
32%
Forehead affected 75
58%
Hair affected 60
46%
Headaches 65
50%
Number responding = 130 / percent responding = 91% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 37. III. Associated Symptoms of Rombergs (page 3 of 4)
1. Please select all that apply (page 3):
Symptoms Responses
(319)
% of Number responding
Heart affected 1
0.9%
Jaw affected 59
56%
Joint affected 22
21%
Morphea 24
23%
Mouth affected 59
56%
Muscle loss 40
38%
Nose affected 55
52%
Numbness 31
30%
Problems with balance 28
27%
Number responding = 105 / percent responding = 73% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 48. III. Associated Symptoms of Rombergs (page 4 of 4)
1. Please select all that apply (page 4):
Symptoms Responses
(391)
% of Number responding
Scalp affected 55
46%
Sensitivity to extreme temperatures 42
35%
Skin, absence of pores 16
13%
Skin is discolored 80
67%
Stress 35
29%
Teeth affected 66
55%
Thin skin 78
66%
Other medical conditions not listed above 19
16%
Number responding = 119 / percent responding = 83% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 56. IV. Triggers for Rombergs (page 1 of 2)
1. What possibly could have triggered Rombergs? (page 1):
Triggers Responses
(155)
% of Number responding
Affected person has an autoimmune disorder 29
33%
Affected person was breast fed 23
26%
Dental work or tooth extractions prior to onset 21
24%
Experienced head trauma of any kind prior to onset 52
60%
Live near a polluted area or any factories prior to onset 11
13%
Lyme disease 5
6%
Miscarriage prior to onset 1
1%
Serious infection of any kind prior to onset 13
15%
Number responding = 87 / percent responding = 61% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 65. IV. Triggers for Rombergs (page 2 of 2)
1. What possibly could have triggered Rombergs? (page 2):
Triggers Responses
(120)
% of Number responding
Symptoms start during puberty (both male and female) 29
38%
Symptoms accelerated during puberty (both male and female) 26
34%
Symptoms start during pregnancy 6
8%
Symptoms accelerated during pregnancy 8
10%
Changes in symptoms after child birth 16
21%
Symptoms start during menopause 1
1%
Symptoms accelerated during menopause 3
4%
Vitamin D deficiency 7
9%
My ideas for Other Triggers 24
32%
Number responding = 76 / percent responding = 53% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 75. V. Treatment for Rombergs
1. Please select any treatments that have been used:
Treatments Responses
(128)
% of Number responding
Medications 43
44%
Other types of treatment 25
26%
Surgery 60
62%
Number responding = 97 / percent responding = 68% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

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Page 99. VI. Any Other Affected Family Members
1. Are there any other family members with facial and/or optical asymmetry?
Asymmetry Responses
(125)
% of Number responding
Yes 6
5%
No 119
95%
Number responding = 125 / percent responding = 87% of total respondents (143).
This chart has a link to additional information.

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Page 99. VI. Any Other Affected Family Members
2. Are there any other family members with neurological symptoms?
Symptoms Responses
(124)
% of Number responding
Yes 19
15%
No 105
85%
Number responding = 124 / percent responding = 87% of total respondents (143).
This chart has a link to additional information.

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Page 104. VII. Miscellaneous Questions (page 1 of 2)
1. Are there any non-Romberg family members who have an autoimmune disorder?
Autoimmune disorder Responses
(125)
% of Number responding
Yes 35
28%
No 90
72%
Number responding = 125 / percent responding = 87% of total respondents (143).
This chart has a link to additional information.

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Page 104. VII. Miscellaneous Questions (page 1 of 2)
2. Are there any other family members who have headaches or neurological symptoms limited to one side of the head?
Have Symptoms Responses
(124)
% of Number responding
Yes 13
10%
No 111
90%
Number responding = 124 / percent responding = 87% of total respondents (143).
This chart has a link to additional information.

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Page 104. VII. Miscellaneous Questions (page 1 of 2)
3. Has the affected person tried any diets (e.g. anti-inflammatory) to help with the Rombergs symptoms?
Any diets Responses
(123)
% of Number responding
Yes 11
9%
No 112
91%
Number responding = 123 / percent responding = 86% of total respondents (143).
This chart has a link to additional information.

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Page 108. VII. Miscellaneous Questions (page 2 of 2)
1. Has the affected person seen any improvements of the Rombergs symptoms with lifestyle changes?
Changes Responses
(119)
% of Number responding
Yes 21
18%
No 98
82%
Number responding = 119 / percent responding = 83% of total respondents (143).
This chart has a link to additional information.

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Page 108. VII. Miscellaneous Questions (page 2 of 2)
2. Have any health professionals that you have consulted suggested any theories of what they believe may cause Rombergs?
Any theories Responses
(125)
% of Number responding
Yes 20
16%
No 105
84%
Number responding = 125 / percent responding = 87% of total respondents (143).
This chart has a link to additional information.

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Page 111. VIII. Closing Survey
1. Any closing comments:
To read the (63) Closing Comments click here.
Number responding = 63 / percent responding = 44% of total respondents (143).


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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.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.


Back to Main Page

(Counter Missing) Visitors since March 2009