This post refers to a study done by Cynthia Gagnon one of the preeminent researchers in myotonic dystrophy. In 2007 a study was published and this post is based on that article. Click here for a full copy of the scientific study ==>Life Habits with Myotonic Dystrophy
Results of the Study
Below if the amount of disruption in actual participation that myotonic dystrophy caused
| Daily Living Item | Total | Adult Type |
Mild Type |
| Major Household Chores | 63.5 | 67.7 | 47.6 |
| Holding a Paid Job | 44.5 | 51.9 | 16.7 |
| Maintaining Your Home | 43.5 | 50.0 | 19.0 |
| Maintain Home Yard | 42.0 | 44.0 | 33.0 |
| Riding a Bicycle | 33.5 | 39.2 | 11.9 |
| Exercise to Maintain Fitness | 31.5 | 37.3 | 1.0 |
| Preparing Meals | 27.5 | 31.2 | 12.0 |
| Tourist Activities | 26.5 | 30.3 | 11.9 |
| Moving on Slippery or Uneven Surfaces |
24.0 | 27.2 | 11.9 |
| Outdoor Activities | 22.5 | 39.2 | 11.9 |
| Getting to Public Buildings | 21.5 | 24.7 | 11.9 |
| artistic, cultural or crafts | 21.0 | 24.7 | 7.1 |
| Sporting or recreational Activities | 22.0 | 24.7 | 11.9 |
| getting to Businesses, shopping | 20.5 | 24.0 | 7.1 |
| Having sexual Relationships | 20.5 | 18.9 | 26.2 |
Results from Previous studies (1996) found for daily life and life habits:
Employment for males 3x lower than general population
20% of males and 50% of Females never worked
47% of individuals in lowest income bracket
(vs 25% of general population)
42% estimated to live below the poverty line
43.6% depended on social security
(vs 12% of the general population)
Conclusions from the Study
1. Adult and mild phenotypes have separate clinical outlooks and must be treated separated and distinctly
2. The adult Phenotype is heterogeneous (a lot of unrelated parts) thus a comprehensive evaluation is needed
3. The mild phenotype is not as affected but there are still specific issues that need to be looked at
4. Since DM1 is progressive environmental factors and access to community services is probably one of the most important factors to alleviated some of the consequences and burdens of the disease.
Results: Participants with the adult phenotype demonstrated
significantly lower participation levels than those with the
mild phenotype on 8 out of the 11 categories of the LIFE-H.
Lower levels of accomplishment were reported in Mobility,
Housing, Fitness, Nutrition, Personal Care, Employment,
Recreation, and Community Life categories among the adult
phenotype. The Recreation category was the most affected,
with 4 out of 7 items revealing compromised accomplishment
among 22–27% of individuals. The lowest satisfaction score
was observed in the Employment and Recreation categories.
In all categories, individuals with the adult phenotype displayed
significantly lower satisfaction levels than those with
the mild phenotype.
Conclusion: This study helped to establish a clearer distinction
between activities and participation levels of individuals
with the mild phenotype and those with the adult phenotype
and supported tailored rehabilitation and community services
to improve accomplishment of life habits.
