Lives unaffected by cystic fibrosis

Mobility, Dexterity and Accessibility

One little understood but growing area of cystic fibrosis (CF) co-morbidity is mobility and grip strength. Traditionally these medical concerns have been associated with aging, multiple sclerosis and arthritis, however cystic fibrosis also causes notable difficulties with joint pain, muscular responsiveness and grip strength.

These unfortunate symptoms may seem to pale in comparison to respiratory and digestive issues, but they exert a constant weight on individuals living with CF as well as increasing their dependency on others.

Sometimes in life, solutions create new problems. The CF community has benefited from fantastic scientific breakthroughs which have extended life expectancy enormously. This is something that can only be celebrated. However, we must also acknowledge that an aging CF population will face new and different challenges.

Accessible consumer packaging and building design are already crucial concerns in Australian society. The CF community needs to lend its weight to this conversation because individuals with CF have a great stake in its outcome.

People living with CF are often obliged to access pill packets for needed medication up to 12 times a day. They are consumers of weight gain products and foodstuffs that can be tightly and inconveniently packaged.

They are also subject to frequent hospital visits which often require extended travel. In all of these scenarios the reduced mobility and dexterity of individuals suffering from advanced CF symptoms need to be looked at and attended to.

The essence of the CF Donut is acknowledging strange kinships and new aspects of the CF condition. We believe that ‘accessibility’ is an important frontier in the future of CF advocacy.

Fortunately the CF community is not alone in these pursuits and we have succeeded in uniting our voices with others Not For Profits and cause groups in order to maximise impact. The Accessible Design Alliance, founded in 2019, was a watershed moment in the fight for accessibly packaged medicine and consumer products.

One dexterity issue that affects the CF community in a dramatic way is the issue of clubbing, mostly in the fingers. In these cases the ends of the fingers will swell and the nail beds will soften and these symptoms can be accompanied by intense pain. It is not a symptom of CF that affects everyone who manages this disease, but we consider clubbing and dexterity-related issues to be important nevertheless.

Pan-Australian accessibility and mobility alliances:

https://arthritisaustralia.com.au/accessible-design-division/

https://arthritisaustralia.com.au/accessible-product-design-alliance/

https://pwd.org.au/australian-cross-disability-alliance-a-voice-for-all-people-with-disability/

CF and Accessibility:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1777828/

https://cystic-fibrosis.com/symptoms/clubbing-fingers-toes/

https://www.mountsinai.org/health-library/symptoms/clubbing-of-the-fingers-or-toes#:~:text=Clubbed%20fingers%20is%20a%20symptom,chronic%20low%20blood%2Doxygen%20levels.