PNH

06/10/2021

Studying with an invisible disability – a student explains

Woman at desk taking notes.

 

A disability - what is it actually? This question is not so easy to answer, because what is commonly understood as a disability can come in many forms and expressions - and then there is also the type of disability that is not noticed at first glance: we are talking about the so-called "invisible disability" . Examples of this are chronic illnesses and disabilities, which are associated with fatigue and rapid exhaustion and thus impair social participation. Aplastic anemia and paroxysmal nocturnal hemoglobinuria can also be included. While in the case of invisible disabilities the possible stigmatization by others does not apply from minute one of getting to know each other, this non-recognition of the disability also leads to expectations that are sometimes overwhelming. Ly Tran has to struggle with this again and again: Ly is a linguistics student and reports in the podcast seriesREAD MORE
By Ulrike
26/07/2021

our virtual group

Mug and Notebook (c) Chris Montgomery on Unsplash

We introduced our regular virtual meetings when we had to cancel our local group meetings due to the pandemic. We didn't know whether anyone would even be interested in sitting in front of the screen and talking to people who were initially unknown about their experiences with aplastic anaemia and PNH. It has now been almost a year since we held our first "trial meeting", and our virtual group has established itself as an independent group.

We are very happy about this and thank you for your encouragement, empathy and loyalty.

The meetings continue to take place every third Thursday of the month at 7 p.m. and we look forward to meeting "old friends" as well as new faces.

next meeting

By Ulrike
26/07/2021

Reminder: Survey on COVID-19 at AA and PNH

syringe with vials for vaccination © weyo

We read and hear it every day in the newspaper and on the radio - the COVID vaccination operation is in full swing and the number of first and second vaccinated people in Germany is steadily increasing. The proportion of vaccinated AA / PNH patients is also increasing, but whether and how they react to the vaccination compared to healthy people has not yet been scientifically recorded. Therefore we have created a short anonymous survey and ask you to tell us about your experience with vaccination. You can also take part in the survey if you cannot or do not want to be vaccinated or if you have contracted COVID-19. In doing so, you help to create a meaningful database to further improve the care of AA / PNH patients in the future.

We make the results of the survey available to science free of charge. Participating patients can also receive the evaluations on request.

The survey and further information can be found under the following link: https://aa-pnh.org/umfragen/irvap/de/ and in English at https://aa-pnh.org/umfragen/irvap/en/

Thank you for your help!

By Ulrike
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