The Romberg's Connection 2009 Survey Results

Other Affected Family Member

Page 100. VI. Any Other Affected Family Members cont.: Describe Family Member
1. Please provide information about this other family member:

Responses (6)	Relationship	Current Age	Age of onset
1	mother	88	do not know, but have only noticed it in her 80's
1	child	7	? from photos, looks like it started when mine did
1	first cousin	35
1	daughter	24	first noticed at 19
1	my son	12	maybe 2
1	grandmother	63	don't know she always thought it was normal / thinks it may be from a small stroke that was not diagnosed.

Number responding = 6 / percent responding = 4% of total respondents (143).

Page 100. VI. Any Other Affected Family Members cont.: Describe Family Member
2. Has this person been medically diagnosed with Rombergs?

Diagnosed

Responses
(5)

% of Number responding

Yes

100%

Number responding = 5 / percent responding = 3% of total respondents (143).
This chart has links to additional information.

Page 100. VI. Any Other Affected Family Members cont.: Describe Family Member
3. Is the person facially affected on:

Facially affected on

Responses
(5)

% of Number responding

the Left side

40%

the Right side

60%

Both sides

Not affected

Number responding = 5 / percent responding = 3% of total respondents (143).

Page 100. VI. Any Other Affected Family Members cont.: Describe Family Member
4. Where on the affected person's body do the symptoms also appear:

Where on body

Responses
(3)

% of Number responding

the Left side

the Right side

67%

Both sides

Not affected

33%

Number responding = 3 / percent responding = 2% of total respondents (143).

Page 100. VI. Any Other Affected Family Members cont.: Describe Family Member
5. Comments

Responses (3)
Son is being observed. Chin changes -- rash became white spot, became brown line. Over time, brown line more evident. Initally didn't even notice it, even though can see it in photos from that time on. Now area has depressed a bit. One doctor calling it a lesion to be observed. Other doctor said he thought it was a hybrid LS/PRS, but need to watch it. Very scary and hard to bear. There is no playbook for this. He also has pigment changes body wide and tested positive for a tick bite, although rhemo said didn't have active Lyme? Recently noted "electric shock" on right side of face, which is scary.
My cousin was also born with a squint. I can only notice a slight asymmetry of her face (still probably in the "normal" range). One of her toes is considerably bigger than the other (since puberty), which means she needs 2 different sized shoes. I think these are both on her right side.
Two daughters with early PRS. (3 daughters in all). Neither of the two have a definite diagnosis because we have avoided a diagnosis for insurance purposes. Both have mild symptoms on appearance. Both have right side atrophy. Both have predominantly right side headaches. Both have more apparent atrophy when looking at them in a mirror. The 24 year old's right breast is smaller. She has white matter on her MRI. Her symptoms started at 19. Her facial atrophy remains very mild. Her headaches are less frequent and less severe, but do cause numbness of her extremities at times. She was diagnosed with Juvenile Rheumatoid Arthritis at the age of 3, and has had a multitude of medical issues. The 18 year old has no white matter but her MRI shows asymmetry of her maxillary structures, temporal lobe and sylvian branches. We first noticed her facial asymmetry at the age of 10. It remains very mild. She suffers from twitching on mostly the right side of her body and in her head as well as numbness on top of her head and in her hand. She has had improvement with her twitching since taking Taurine, an amino acid supplement. Her headaches have been debilitating at times. She has found a great deal of relief from taking Petadolex. She has an autoimmune episode after nearly every "bug" she catches.... these have included toxic synovitis, myositis, costochondritis, pilomatrixomas, and so on.

Number responding = 3 / percent responding = 2% of total respondents (143).

Page 102. VI. Any Other Affected Family Members cont.: Comments for facial and/or optical asymmetry
1. Please enter any comments for other family members with facial and/or optical asymmetry:

Responses (3)
Please see previous comments. Also, our great aunt also had a squint and so does my son.
My son is not diagnosed because a professor told me it would be a problem according to insurance. Our general practioner realizes that my son is affected - but it is up to me whether a diagnosis is doing anything good for him.
My grandmother thought it was normal, nobody ever noticed it except me. Saw in the mirror one day that her face looked liked mine. Small atrophying in lips and chin and brown spots all over neck. She thinks it may be from a small stroke that was not diagnosed.

Number responding = 3 / percent responding = 2% 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.