aHUS alliance Global Action has previously brought up the concept of “Long aHUS ” in its articles during the COVID pandemic. An enormous amount of publicity has been given to the post COVID infection phenomenon of “Long COVID”.
COVID is a common disease so of course more people will be interested in it. Perfectly well people, probably with no experience of major ill health in their life, are suddenly plunged into critical, life threatening situation and find it leaves a legacy. Its scary to face one’s own mortality. it is traumatic for family and friends to witness it too.
Then being left with a legacy of fatigue, depression, anxiety, sleep problems ,breathlessness or brain fog etc. Previously fit and energetic people now finding life to be an uphill struggle. It is a shock to them.
Search the internet for “long COVID” information and you will get almost endless results listed. A substantial amount of research has been done on the topic . Rarely a day goes by at the moment without some new article appearing on the subject.
aHUS patients included the following question in their Global Patients Research long before the pandemic ” Does the anxiety and self-esteem ( note : the inverse of depression) of aHUS patients vary significantly between treatment types and what can be done to reduce and boost them respectively?”
Search the internet for research and help to answer that question and little will be found other than articles by this website or based on articles from this website. The research question wording is crafted so it is inclusive of those who have chronic kidney failure from their aHUS encounter – kidney impairment is a hallmark of aHUS, as lung impairment is a hallmark of the COVID .
Kidney failure the ultimate long aHUS both physically and mentally.
But there has been one study. That done by the aHUS Registry. In “Functional Assessment of Fatigue and Other Patient-Reported Outcomes in Patients Enrolled in the Global aHUS Registry” the authors cited the Patients Research Agenda in its report “A Global aHUS Patients’ Research Agenda using input from patients, patient advocacy groups, and caregivers was developed.9 The research agenda identified several knowledge gaps, including the impact of aHUS-related treatments on clinical, psychological, and socioeconomic patient-reported outcomes.“ HERE is a link to the full report.
But what to do about it? Like many long COVID sufferers, long aHUS sufferers do not seek help, they Just battle on up that hill. Such stoic self sufficiency is admirable if a personally thought through way out is being followed.
Some may seek solace in social media groups where there may be sympathy but the majority may not have had that experience. Some may even have found their way to this website , where we have listened and sign posted sufferers to ways other people have found to get back to well being.
For long COVID, it is reported, clinics have been set up to help sufferers. Multi-disciplinary teams are treating long COVID impacts including some for post traumatic distress disorder and anxiety . It is both a physical and mental health approach that is needed.
Such interventions for long aHUS sufferers are not so readily available nor offered as freely as seems to be case for long COVID.
Common verses Rare experiences.
Maybe as COVID related support groups have infinitely more resources than rare disease groups some of the online advice for long COVID may be pertinent to long aHUS.
Maybe also those patients whose aHUS was caused by COVID will be able to see it from both sides of the coin
It is not down to just one thing and there are many reasons for this legacy from aHUS. It needs to be talked about, and given justifiable attention, to be resolved.
‘But first let the aHUS community needs to call it for what it is …..LONG aHUS.
And after all aHUS patients have known about it longer.
Article No. 485
Other “Long aHUS” related articles
Article No. 354 4 July 2020 Earlier this year aHUS Global Action published a major four part report (see HERE) on the importance of patient reported outcome data in…CONTINUE READINGaHUS Patient Fatigue
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…CONTINUE READINGaHUS Fatigue it matters to aHUS patients
There were several questions in the Rare Disease Day video about how aHUS patients feel after recovery from aHUS ( click here and here to read them) and how research…CONTINUE READING