Visitors to the aHUS alliance Global Action website may have observed a new feature on our home page. Yes a world map which shows the countries where there are aHUS patients known to global aHUS patient advocates. (see a copy at end of article)
There are 59 of them out of 233 listed countries and dependencies in the world.
These are the 59.
Effectively “global” aHUS advocacy has existed for nearly 25 years. So it has taken all that time to achieve the current “known aHUS patient footprint”.
Collectively these countries have a population of nearly 5.75 billion. Using the average patient prevalence rate derived from our Rare Disease Day video project (3.3 surviving patients per million) there would be approaching 19, 000 patients living with aHUS in the 59 countries. Together they are about the population of small town of neighbours. An aHUS Town.
aHUS can happen anywhere in the world’s 233 countries but statistically only 175 of those countries etc have a population large enough to have at least one aHUS patient.
We know of 59. So 116 are not known yet to have a connected reach.
It could be that unbeknown to us some patients in the 116 countries have visited global aHUS sites. But are yet to reveal themselves.
This was the case for Nepal as this article was being written.
Someone contacted aHUS Rest of the World and soon began visible patient advocacy in Nepal.
Nepal is a country between India and China and is perhaps best known for having the highest mountain in the world- Everest.
With a population of over 30 million there could be around 60 aHUS patients in Nepal but there is no access to complement inhibitors there as far as is known.
Sabita from Nepal established the connected reach. She has even created a Facebook page under the embrace of aHUS Rest of World. Facebook is popular in Nepal . Sabita’s intention is to raise aHUS awareness about what it is like to have aHUS in Nepal now and what it could be like in the future. Hopefully many of the possible 60 patients and their families will join in to give and receive mutual support.
There has even been a 2022 published article authored by Nepalese doctors. A case study of a “typical aHUS patient”, a ten year old girl in Kathmandu saved without a complement inhibitor by using steroids and mycophenolate mofetil immunosuppressants. Here is a link to the article by Gurung et al.
Sometimes having and recovering from aHUS presents a challenge. A challenge akin to climbing the world’s tallest mountain while rolling a big stone in front of you.
So already more is known about aHUS patients in another country. Nepal has been added to the map as a “new neighbour” country as we progress towards the 175.
How many more neighbours will be found as the search begins?
Come back from time to time to find out about the progress being made towards our target.
Or to share any leads with us about other potential countries with someone living with aHUS.
Anyone can tell us if they know an aHUS patient in any other country. As well as tell them that we now know about them too. Also that we will add their country to our map.
They will have become Global aHUS Neighbours.
Article No. 741
