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.

1. Ages:

   10	11	13	17	17	18	20	22	23	23	24	24	28	28	30
   30	31	32	32	33	34	35	37	38	38	39	40	40	40	43
   44	45	46	46	46	46	48	48	49	51	51	53	55	58	63

2. Marital Status:

   Divorced...	3
   Married....	22
   Single.......	20

3. Residence:
   

   Argentina 2	Australia 6	Canada 2
   Europe 5	New Zealand 3	United States 26

4. Sex:
   

   Female...	41
   Male.......	4

5. At what age were you diagnosed?
   

   4	4	6	7	7	10	10	10	10	11	12	12	12	12	12
   14	15	16	16	18	18	19	19	21	22	23	24	24	25	26
   27	29	32	32	32	34	35	35	35	37	38	42	55	_	_

6. Age for onset of Romberg symptoms?
   

   0	3	3	4	4	5	5	5	6	6	6	6	7	7	8
   8	8	8	9	9	9	9	9	9	10	12	13	14	14	15
   15	15	17	17	17	18	22	24	27	30	30	31	40	_	_

7. Any medication to stop atrophy?
   

   Yes......	9
   No........	35

   Medications used:
   

   B-12	Cortisone	Dapsone	Imitrex	Methotrexate	Neurontin
   Plaquenil	Prednisone	Relafen	Tegretol	Vicodin	_

8. Severity of atrophy - on a scale of 1-10 (mild to severe)

   Scale	Count
   1........	Two
   2........	Five
   3........	Five
   4........	Six
   5........	Six
   6........	Four
   7........	Three
   8........	Three
   9........	Six
   10........	Four

9. Have you had reconstructive surgery?
   

   Yes..........	28
   No............	17

10. What type of procedure was used in your case?
    

    bone transplant	brain surgery - cut 5th cranial nerve	coral implant	derma-fat graft
    fat implant	fat injection	Omentum	micro vascular free flap
    pedical flap	Prosthesis	radical surgery	rhinoplasty
    silicone	skin grafts

11. At what age was surgery performed?
    

    teens to 30's	11-21	12	13	14	16	16-31	18-21	20-22	20's
    21	21	21-30	22	22-27	24	25	29	32	32
    33	35	35	36	37	44	48	56	upcoming	_

12. Was the surgery a success?
    

    Yes...............	11
    No.................	8
    Somewhat.....	7

13. Any head or facial trauma?
    

    Yes..........	15
    No............	29

14. Birth order? ( 1st born, 2nd, etc.)
    

    First born............	8
    Second born.......	6
    Third born...........	3
    Fourth born.........	2
    Fifth born............	1

15. Romberg Symptoms (number of people reporting for each symptom)
    
    1. Vision:
       

       blurred vision...........	14
       corneal scarring.......	5
       corneal transplant....	none
       dilated pupil.............	2
       discharge................	2
       double vision............	2
       glasses...................	24
       keratitis (dry eye).....	18
       receding eye............	18

    2. Teeth:

       braces..................	2
       delayed eruption....	11
       loose....................	5
       loss of..................	13
       misaligned............	2
       missing.................	7
       overbite................	1
       overcrowding........	2
       receding gums......	2
       root decay............	2

       (Adele added some of the additional information sent to her that was not included in the original survey.)

    3. Skin:
       

       discoloration......	30
       thin...................	24
       tissue loss.........	33

    4. Bone or muscle loss:
       

       bone loss..........	21
       muscle loss.......	24

    5. Face:
       

       both sides.........	0
       left side............	21
       right side...........	23

    6. Heart:
       

       ailments...........	0
       murmur............	10
       pacemaker.......	0

    7. Hair:
       

       alopecia (hair loss)....	14
       eyebrow...................	19	(missing, all or part of)
       eyelashes.................	13	(missing, all or part of)
       excessive hair...........	5
       loss of body hair.......	4
       thinning......................	8

    8. Forehead:
       

       protruding bone........	16
       thin skin...................	22

    9. Scalp:
       

       indentations.............

       27

    10. Seizures:
        

        Jacksonian epilepsy (sensory seizures)......	4 (some type of seizure)
        loss of feeling.............................................	16
        tingling sensations.....................................	22

    11. Brain:
        

        atrophy of.....

        3 (some atrophy)

    12. Blood:
        

        high blood pressure..........	5
        low blood pressure...........	6

    13. Mouth:
        

        palette...........	9	(problems)
        thinning lip.....	28
        tongue...........	9	(atrophy)

    14. Nose:
        

        deviated septum......	12
        loss of tissue...........	21

    15. Ears:
        

        hearing loss..............................	7
        missing ear...............................	0
        some atrophy of the ear canal....	1

    16. Facial Pain...........26
        
    17. Headaches:
        

        fatigue....................	22
        headaches..............	6
        migraines................	24
        muscle weakness....	17
        nausea...................	14
        slurred speech........	6
        vomiting..................	10

    18. Jaw:
        

        jaw spasms.............24

    19. Other body parts with atrophy?
        

        ankles	arm	calf	hand	thigh	hysterectomy
        left body smaller	left pectoral muscle	leg	lung-digestive track	neck-back	scleroidal tissue
        shoulder	toes	waist

16. Other medical conditions?

    allergies	asthma	cerebral aneurism	chronic fatigue	cystic
    endometriosis	herniated disc	hypothyroidism	Lupus	manic depressive
    mastoid disease	reflux-esophagus	Raynauds	scoliosis	thyroid problems
    visible blue veins

17. Sensitivity to extreme temperatures?

    cold temperatures....19

18. Academics:

    Difficulty in school?..................	3
    Learning disabilities?...............	3
    Unable to concentrate?............	12
    Difficulty in one subject area?...	History....1
    	Math.......6
    	Science...2

19. Behavioral problems with classmates?.......2
20. Difficulty with self-expression?.......12
21. Psychological disorders
    

    anxiety....................	24
    depression..............	24
    panic attacks...........	11
    phobias...................	12
    self-esteem issues...	28
    stress.....................	22

22. Other:

    daily life struggles....................	17
    difficulty in relationships............	14
    difficulty with job opportunities...	11
    negative experiences................	18

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.