Awareness of aHUS Awareness Day

Article No 381

25 September 2020

To the aHUS alliance Global action aHUS Awareness Day has traditionally begun in Tuvalu in the Pacific Ocean  and ending in the  Midway Islands in the same ocean, but on different sides of the International Dateline. It is now the 25 September on Midway. Another aHUS Awareness Day is over.
Global Action prepares for the day for much longer than a day , developing plans and putting them into action from early July. So it so satisfying when all comes to fruition to allow focus on the day to what actually happens . The aHUS Awareness Day video and support from its contributors is a testament to that.
Raising awareness about aHUS is primarily about the disease being recognised in the diagnosis process, This is something each patient who encounters aHUS goes through. It is their own experience.
If it doesn’t get identified at all or too late the consequences can be  dire. If it does and quickly  then much benefit results with treatment. The importance of the timing of someone  saying “You’ve got aHUS” can not be stressed enough.
Renal clinicians are associated with many renal diseases not just aHUS,  so what was striking about aHUS awareness Day 2020 was the number of clinicians who linked their work to aHUS Awareness Day.
Prof. Anthony Chang , a renal pathologist from Chicago gave a talk about diagnosing aHUS  from other possible TMAs diagnoses or “masqueraders” ( a synopsis of what he said can be seen in Article 380)
Dr Richard Berwick from Los Angeles  talked about aHUS diagnosis in pregnancy and a  recording of his talk can be heard
Prof Arvind Bagga and his team  from New Delhi chose Awareness Day to release a Handbook for Parents with Children with HUS ( copy of book Hemolytic_Uremic_Syndrome Booklet for parents
Dr Lillian Palma , a pediatric nephrologist  from San Paulo ,Brazil, had an article about “Thrombotic Microangiopathy and their mimickers” released on the day.
Dr Nicole Van dee Kar and her Complement collaborators in Nijmegen featured in the International Complement Society newsletter ( read about them at this link.)
Dr Natasa Stajic of The Institute of Mother and Child Health Care of Serbia “Dr Vukan Cupic” in Belgade SERBIA was listed as an aHUS Clinician interested in aHUS on our website .Her outreach is to Macedonia, Montenegro, Bosnia and Herzegenovia , and Kosovo as well.

All of these contributions to the day give hope to those who might have been failed by diagnosis had awareness of aHUS  not been enough.

Enough awareness was what aHUS Patients, who contributed to the Rare Disease Day 2020 video about their vision for aHUS, frequently mentioned. This collectively became the Global aHUS Pastients’ Vision:

When enough aHUS/cTMA awareness helps everyone in the world get affordable access to the right treatment they need to be cured and be normal, it will be a good day.

We are not there yet, but all who spread the word about aHUS on aHUS Awareness Day 2020 have moved us a step forward.,

Hopefully there may be one of two of the forty or so aHUS patients around the world, whose aHUS may have onset on 24 September 2020, who will have benefited from awareness raised in the past. Even though, unless they have family with aHUS, they would not have been aware of aHUS themselves when it happened to them.

As always Linda Burke , Jeff Schmidt and Kamal Shah of the aHUS alliance have spent a lot of their time communicating on the messages of aHUS Awareness Day to help it along .

Len Woodward
Director Trustee of aHUS alliance Global Action


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