The Romberg's Connection 2009 Survey Results

Joint Affected

Page 40. III. Associated Symptoms (page 3 of 4) cont.: Joint affected
1. Which joint(s) is/are affected:

Count	Responses (18)
1	all - she developed arthritis
1	elbow and knee on affected side
1	hand joint pain, could be arthritis
1	hands, knees, hips
1	jaw
1	jaw / mandibular joint
1	jaw, cheekbone
1	left Jaw bone
1	left knee and elbow
1	left knee, hip, elbow, wrist, shoulder
1	left side joints, knee, hip, elbow
1	legs and arms
1	major joints… knees… elbows...
1	not sure
1	none
1	right ankle
2	TMJ (Temporomandibular Joint in Jaw)

Number responding = 18 / percent responding = 12% of total respondents (143).

Page 40. III. Associated Symptoms (page 3 of 4) cont.: Joint affected
2. Please rate the joint impairment:

Rating

Responses
(20)

% of Number responding

1 (very mild)

15%

2 (mild)

10%

3 (moderate)

40%

4 (severe)

30%

5 (very severe)

Number responding = 20 / percent responding = 14% of total respondents (143).

Page 40. III. Associated Symptoms (page 3 of 4) cont.: Joint affected
3. Comments for Joint affected:

Responses (10)
I have to exercise or else the pain is unbearable.
Only knee is severe. All others are mild so far.
I believe that PRS has weakend the muscles on the left side of my body, causing me to injure both my elbow and knee on the affected side of my body.
Symptoms alleviated with the surgery and braces... one cannot say if joint pain in other areas of the body are due to Rombergs unless a medical professional says so.
Lower jaw is uneven positioned.
Mostly noticeable during weather changes.
They click, grind, crunch when used/rotated. No pain.
She has arthritis along with loose joints. Weather plays a big part in how she feels. There are times she can barely walk.
not sure
Weather is permitted by how she feels. There are days she can not get out of bed. Then there are days she is just like a typical 8 year old.

Number responding = 10 / percent responding = 7% of total respondents (143).

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.