The annual aHUS Awareness Day video ( see HERE) had a theme of best decision making in the recovery from an encounter with aHUS.
Fifty three participated and there were fifty three different statements in a 10 minute long video. Each was about what they each had made their best decision.
The theme this year suggested by the Chinese aHUS patient organisation ( what would you suggest next year?) permitted countless potential different decisions. Though looking a little closer at each statement, a narrower range of the types of decision emerges.
They turn out to be about :
- psychological adjustment
- treatment management
- Self caring
- Altruism
- Social support
- Spiritual support
Psychological adjustment was the theme of 15 respondents with decisions about seizing the day and doing the best with the new norm in their lives. Acceptance.
Deciding how to be involved in treatment decision making with an emphasis on developing self advocacy, or a conscious decision to go with flow with total reliance what doctors tell them. This was a key decision area for 11 patients.
Some nine patients concentrated on improving themselves through self education about aHUS or focussing on a new skill/activity to pursue.
Altruistic aims to help others were decisions made by twelve participants and included participation in clinical trials for the benefit of others or public advocacy. Or just passing on skills/knowledge acquired in disease recovery to others.
Three patients patients saw their decision to seek social support as the best decision they made. Usually from online platform groups.
Similarly three made a decision to rely on spiritual support.
Different routes but the same end. Making decisions to take back a locus of control into their lives after the turmoil of an aHUS encounter took it away.
Deciding how to shift their locus of control is a mile stone to be reached on the road to recovery and regaining personal self esteem and confidence.
A thanks to all the participants who collectively have contributed more than just awareness but insights into the aHUS patients’ recovery path.
Article No. 759
