Charcot-Marie-Tooth Disease Survey Results



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Diagnosis

CMT Symptom Information

CMT Symptom Information II

Skin Problems

Deformity of Hands and/or Feet

Mobility and Dexterity

Mobility Aids

Specific Medical Problems:

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Course and Treatment

Other Aids and Assistive Devices

Lifestyle and Activities

Feedback





Mobility and Dexterity


TYPE UNKNOWN

TYPE 1

TYPE 2

Percentage of Each CMT Type in Surveys Received

35.27%

46.43%

18.30%

% who are able to straighten legs completely while sitting

  • a)Right


86.21%



65.96%



84.00%

  • b)Left

82.76%

63.83%

84.00%

% who lose balance more easily when eyes closed and standing with feet together

55.17%

51.06%

80.00%

have a reduced sense of touch, heat, pain, etc

65.52%

85.11%

68.00%

have difficulty knowing where feet/hands are without looking at them

27.59%

51.06%

64.00%

have difficulty walking

93.62%

96.55%

100%

have difficulty with balance

95.74%

96.55%

100%

have had problems with Achilles Tendon (Heel Cord)

37.93%

57.45%

52.00%

have difficulty writing

82.76%

74.47%

64.00%

who have neat handwriting

10.34%

29.79%

32.00%

frequently drop items

72.41%

78.72%

84.00%

feel Hands worse than Feet

6.90%

10.64%

8.00%

feel Feet worse than hands

65.52%

74.47%

72.00%

feel Hands and Feet equally affected

24.14%

14.89%

20.00%

CMTers who have sensation of Asymmetry:

  • feel left side worse than right

44.83%

42.55%

52.00%

  • feel right side worse than left

24.14%

31.91%

32.00%

  • feel both sides equal (Symmetrical)

31.03%

25.53%

20.00%

Mobility Aidstop

Percentage who feel their shoes are too heavy for their feet

48.28%

38.30%

52.00%

Percentage who wear orthotics

34.48%

34.04%

48.00%

Percentage who wear Ankle Foot Orthoses:(AFO's)

48.28%

34.04%

56.00%

Percentage who use wrist splints

13.79%

17.02%

12.00%

Percentage who use a Cane

37.93%

37.23%

40.00%

Percentage who use crutches for mobility

13.79%

17.02%

4.00%

Percentage who use a walker

17.24%

17.02%

12.00%

Percentage who use a Wheelchair Part Time

0.00%

32.50%

8.33%

Percentage who use a Wheelchair Full Time

3.45%

4.26%

4.00%

Percentage who use a scooter

3.45%

4.26%

4.00%

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