They “get it ” when they can get it.

At the present incidence levels reported worldwide, Coronavirus 2019 (COVID-19) still fits definition of a rare disease. To be classified as a more common disease, COVID-19 will require 200,000 or more people in the USA to become affected, or 1 in 2000 people in Europe.

For the vast majority  of those affected, seemingly, coronavirus will not be life threatening nor debilitating enough  to be considered  a rare disease.

Unlike those born with rare diseases, however, coronavirus is acquired; but what is more important everyone could acquire it because, until now, no one has had immunity to it.

Observe  the reaction of society to coronavirus ,governments, the main stream media and the social media.

It is “bloody scary” to have a rare disease.

Those who have experienced aHUS know that feeling. Now the general public are beginning to get a sample of it. Governments are not doing enough to protect them or to treat them. Diagnosis is incomplete and data about actual prevalence unclear.There are restrictions on their freedoms. They are going to face financial difficulties, their confidence in the future eroded for ever.

An overwhelming sense of social injustice is upon them.

Welcome to the rare disease world.

Yet for the vast majority of those infected their immune system will do its job. Then life  will just move on.

That is normality.

Not so for those with rare diseases as this previous global action article (click here to read) about the difference between the common and the rare,  tried to convey. It is not intentional  but just lack of awareness.

Two weeks ago it was Rare Disease Day. Though rare  diseases affected many ,many more people than the headline statistics about coronavirus 2019 are showing today , the day barely featured in the main stream media.

Today whipped up by the news,  people are now conscious of their own risks and vulnerability and have some inkling and insight of what it might be like to have  a rare disease for a week. They just don’t know it.

This is not intended to diminish what might happen to those with underlying health conditions or who are older with weaker immune systems.

Apart from susceptibility to aHUS,  the aHUS community will also have experience of such conditions being asthma, diabetes, hypertension or kidney disease, all of which are much more common.

It is very difficult to find anything in the coronavirus news about what specifically happens to those who have the worst of outcomes, sometimes there is a vague reference to an “excessive immune response”.  What is meant by “excessive” and which facet of the immune system is not clear?  There is little published research on it to date. But those who are conscious of aHUS tend to prick up their ears at the mention of “excessive” immunity activity-

Increasingly, advice is emerging  about coronavirus and kidney disease. Usually  general overarching advice mainly for those on dialysis or with transplants and who are immunosuppressed. That advice is helpful  too for many in the aHUS community.

Unless Global Action has missed something , nothing specific to aHUS has emerged so far. A “coronavirus COVID-19 aHUS” search  produces nothing. Not even when “Alexion” is added to the search terms mix.

Can the coronavirus trigger an infection TMA? The newly posted trial ( aHUS Trials Watch 10) seems to suggest that. If so would those gentically susceptible to aHUS be at risk? Questions not specifically answered anywhere, mainly because it will be rare event. For those with rare diseases lack of information is not unusual.

The alliance is not able to advise*.

In a few years this  virus will become just  one of the causes of the  “common colds” that year and there will be “herd immunity”. It will not be worth a mention then. Those getting it will be as invisible as those with rare diseases.

But for now the general population get what having a rare disease is like. It is not good.

 

*The author is following the general advice to delay infection. See links below

How to avoid catching or spreading coronavirus

Do:
wash your hands with soap and water often – do this for at least 20 seconds

always wash your hands when you get home or into work

use hand sanitiser gel if soap and water are not available

cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze

put used tissues in the bin immediately and wash your hands afterwards

try to avoid close* contact with people who are unwell

avoid crowds, especially in poorly ventilated spaces. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.

Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships.

 

Don’t:

 touch your eyes, nose or mouth if your hands are not clean

*Avoiding social contact means spending less than 15 minutes with someone at distance of more than 2 metres/yards. The time and distance apparently needed to catch or pass on the virus.

 

But increasingly there are links in other countries that aHUS families might have high interest in these topics:

 

WHO – Coronovirus Symptoms (see Learn More links)

NHS – COVID-19: Dos & Don’ts (More, including Travel Tips)

CDC- Schools, Workplaces & Community Locations 

CDC – Coronavirus:  Getting Ready at Home

American Society of Transplantation:  FAQ for Transplants & Coronavirus

National Kidney Foundation:  Kidney Patient Prep for Coronavirus

KidneyCare UK:  Coronavirus (COVID-19) Guidance for patients with Kidney Disease

Renal & Urology News: Dialysis Facilities Brace for COVID-19

CDC:  Pregnancy & Breastfeeding, COVID-19 FAQ

RCOG: Pregnancy & COVID-19

Check with your medical team for any concerns and for their

recommendations specific to your current health & clinical profile.