aHUS Fatigue it matters to aHUS patients

aHUS is a disease in which oxygen carrying red blood cells are destroyed along with the kidneys too. The latter plays a little known role in the production of red blood cells. So for aHUS dialysis patients its a double hit Loss of kidney function means dialysis patients rely on a synthetic protein  erythroporietin,  EPO ,to get good levels of haemoglobin and no longer be anaemic.

10 months ago an article appeared about aHUS and fatigue which has had little interest shown in it . Its title

FACIT-FATIGUE SCORES IN ADULT PATIENTS AT ENROLLMENT INTO THE GLOBAL aHUS REGISTRY  ( see abstract here)

Facit stands for is “functional assessment of chronic illness therapy and in this case it applies to the feeling of fatigue. There are other assessments for other facets of living with chronic illness this is just one. The scale used for scoring is ranged from 0 to 52. The higher the score the less fatigue.

The general poplution has a FACIT-Fatigue level of 44 on average.

In this study a base score of FACIT -Fatique was determined for adult aHUS patients at the point at which they were enrolled in the aHUS Registry.

Of the 1549 patient in the registry at May 2017 only 621 had submitted usable data.

Of these nearly two thirds were female and had a mean age of 43. The study further stratified the cohort into those still experiencing TMA ,those still on dialysis , those receiving PE/PI and those getting eculizumab.

The overall mean score at the base date was 34.7. Dialysis patients fared worse 25.8 and those with on going TMA 32.5.

This is just the base figure report and future analyses by the Registry will examine for any changes over time .

The quality and validity of follow up data depends on aHUS patients enrolled in the Registry completing their reports.

Their participation helps answers questions for others as aHUS patients included on-going ailments and side effects of aHUS and its treatment in their agenda.

Facit-fatigue is one such facet