There was one question about COVID vaccinations and aHUS in the RDD2022 Video,
Global Action featured several articles about COVID vaccination including advice given by clinicians as well as the experiences of aHUS patients. Advice was that if vaccinations are offered it would be best to have them, particularly for those clinically vulnerable, which aHUS patients are, particularly if they have had a transplants, Samir.
Generally aHUS patients on eculizumab getting a COVID infection found that it took longer to get over it and for the virus to disappear. Vaccination would help fight the infection for them. Some who have had COVID twice found the post vaccination experience much different to the first in terms of symptoms and duration.
For those people who were in remission from aHUS, or knew they were genetically susceptible to it, vaccinations were also advisable. It also has become apparent that COVID can trigger aHUS and relapses, or a new onsets are possible.
Only one article has been found about a COVID vaccination triggering aHUS in a susceptible person and eculizumab treatment was needed.
It is at the end of the day a balance of risks, vaccinations cannot prevent someone catching COVID but their added immune response will determine its course. Some may have COVID but not even know they have had. Many young people have had that experience. Some people though end up in a very serious state.
Andrea from Mexico had two questions to ask , this one was about genetic testing facilities.
It is hard to believe that in 2022 that no hospital or research centre has not bought the equipment needed to undertake genetic testing for aHUS in Mexico, Andrea . Even if it cannot help with aHUS diagnosis in the acute period of the disease on set, genetic knowledge helps understand what will happen to a patient ( the prognosis as doctors say) .It provides information that is important for kidney transplant and pregnancy decisions. And help with cost effective management of the illness.
But if it is the case, and doctors are prepared to pay for it tests can be done in laboratories in other countries. There are several centres in the USA and in Brazil. Some research centres there may not even charge as genetic test information may help them with aHUS research. All it requires is for the patient to give a blood sample, or these days a simple swab of the inside of their mouth.
Some patients find that after genetic testing nothing has been found, Their aHUS is idiopathic as doctors call it. Remember Albert from Phoenix, he was one of very few men to not know their genetic cause in Phoenix Arizona..
Jackie asks what research can then be done to find a genetic cause.
Initially aHUS genetic testing looks at a panel of complement and other components which can make someone susceptible to aHUS. If something is found then advice would be based on the finding.
If nothing is found then researchers would look for novel but rare genetic mutations, variants, markers which may be implicated in causing aHUS. That would be first research into idiopathic aHUS, Jackie .
It is how all those items on the genetic panel have been found since the first genetic cause for aHUS was discovered 25 years ago. The Complement and other systems like coagulation are being continual being investigated by Complement researchers. It is how DGKE causes, Plasminogen causes and Monoclonal Gamopathy of Unknown Significance causes of an aHUS TMA were found when previously they were thought to be just Idiopathic aHUS.
More research is being done on what are known as Secondary TMAs , aHUS is a Primary TMA, to see The aim is”what part Complement plays in how they are caused. A bigger overlap between aHUS and other conditions is emerging.
Article No. 508