Resources » 2012 Survey

Basic Information

Gender of Person with M-CM

Number of responses: 51/51. Question type: select one.

Female 22
Male 29
Other 0

Age of Person with M-CM

Number of responses: 51/51. Question type: open-ended

0-12mo 6
12-24mo 4
2 years 5
3 years 7
4 years 2
5 years 3
6 years 2
7 years 5
8 years 7
9 years 1
10 years 4
11 years 1
12 years 1
14 years 1
16 years 1
18 years 1

Ethnic background of individual

Number of responses: 51/51. Question type: select + open-ended other

Black or African American 1
Hispanic or Latino 3
White 46
North African 1
Native American 1
Mixed hispanic caucasian 1

Has the individual in question been diagnosed with M-CM?

Number of responses: 45/51. Question type: select one.

A physician feels that M-­CM is the most appropriate diagnosis, but it is not considered definite and is revisited occasionally. 7
The individual has a definite M-­CM diagnosis from a physician. 38

Age of diagnosis

Number of responses: 51/51. Question type: open ended, answers sorted into groups, required

Birth to 2 months 8
3 - 6 months 10
9 - 12 months 5
13 - 23 months 10
2 years 9
3 years 5
4 years 1
5 years 1
6 years 1
15 years 1

Did the individual in question have one or more different diagnoses before getting an M­-CM diagnosis? If yes, please list other diagnoses that the individual received.

Question type: open ended, answers sorted into groups, many responses were prefaced with "possible" or "suspected"

Klippel-Trenaunay-Webber 5
Klippel-Trenaunay 4
Proteus 3
Sturge Weber 3
Cutis Marmorata Telangectasia Congenita (CMTC) 2
Polymicrogyria 2
Megalencephaly-polymicrogyria-polydactyly-hydrocephalus syndrome (MPPH) 1
Beckwith-Wiedemann 1
PTEN 1
Port Wine Stain 1
Diffuse Capillary Malformation with Overgrowth 1
Provisionally Unique Vascular Anomaly 1
Overgrowth Syndrome of Unknown Origin 1
Macrocephaly Cutis Marmorata 1
Hypotonia 1
Storage Disease 1
11 people said "no"
15 didn't answer