Aplastic anemia (AA)

06/03/2022

Bringing together AA/PNH patients

Photo: Guido Grochowski_Adobe Stock

 

Most people who suffer from a rare disease such as aplastic anaemia (AA) or PNH are initially alone with this diagnosis: Since only a few thousand people in Germany suffer from AA and PNH , hardly anyone of their family and friends has ever heard of these diseases, let alone suffers from them themselves. This often makes it difficult for those affected to exchange questions, worries, tips and experiences.

At this point, we as an association, together with the lichterzellen foundation , would like to bring together locally as many AA and PNH patients and relatives as possible , so that they do not only meet on the internet, but maybe soon face to face with other affected people in their vicinity. We keep a list of patients and relatives in which you can register if you wish. Please fill out this form and send it to us.

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By admin
09/12/2021

Recommendations regarding COVID-19 vaccination in AA/PNH updated

syringe with vials for vaccination © weyo

 

The SARS-CoV-2 pandemic continues to have us in its grip. Many AA/PNH patients are seeking advice on whether to get vaccinated (again) against the virus. Two of Germany's AA/PNH specialists, Dr Britta Höchsmann (UK Ulm) and Dr Jens Panse (UK Aachen), have analysed the scientific data available so far and updated their recommendations on vaccination. The two doctorsemphasise that their letter refelcts their personal recommendations and is not an official statement of the university hospitals or theDeutschen German Society of Haematologoy and Medical Oncology (DGHO). The letter should be understood as an aid until the statement of the DGHO expert group (non-malignant haematology working party) is available.

In general, Dr Höchsmann and Dr Panse consider the risk of infection with the SARS-CoV-2 ("Corona") virus to be more serious than the possible consequences of vaccination. The two experts emphasise that depending on the disease and status, some things should be taken into account, e.g. time of vaccination, type of vaccine etc.

For information is available in German in the recommendation letter regading COVID-19 vaccination in AA/PNH by Dr Höchsmann and Dr Panse.

By admin
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
03/10/2021

Information on corona vaccination for aplastic anaemia

In a DGHO paper, Prof. Dr. Alexander Röth from the Essen University Hospital points out suspected cases in patients with aplastic anemia in connection with the SARS-CoV-2 ("Corona") vaccination. At the West German Tumor Center (WTZ), relapses of the disease (recurrences) have been observed in 3 patients after vaccination. In 3 other patients, the number of blood platelets (thrombocytes) continued to fall, and 2 patients received the initial diagnosis of aplastic anemia shortly after the vaccination. Patients with aplastic anemia should therefore consult their treating hematologist regarding (further) SARS-CoV-2 ("Corona") vaccinations. Download DGHO paper
By Ulrike
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