illness

27/04/2021

Collection of COVID-19 vaccination data from AA / PNH patients

Dear fellow AA and PNH patients,

Some time ago the first AA / PNH patients received their COVID-19 vaccination. But what effects do the vaccination or the COVID-19 disease have on our relatively small group of patients? In order to collect knowledge about this and to be able to make the results of science available for better care in the future, we are carrying out an international survey in cooperation with the Lichter Zellen foundation . The data is collected completely anonymously, i.e. without any personal or personally identifiable information. There is no way that your data can be assigned to you afterwards.

If you would like to receive further information or results about this survey or the AA / PNH register from us, you can enter your e-mail address after the survey. This is saved separately from the survey data.

The survey can be accessed under the following link: https://aa-pnh.org/umfragen/irvap/de/

Thank you in advance for your participation! You are helping all AA and PNH patients.

We would be delighted if, after answering the survey, you would inform other AA / PNH patients about it. If you have any questions or suggestions, please contact us by email at info (at) aa-pnh.de .

By Ulrike
25/04/2021

Exercise reduces risk of severe COVID-19 courses

It's no secret that exercise is good for our body: we have all heard or read somewhere that regular physical activity reduces the risk of developing metabolic or cardiovascular diseases, for example. For about a year, however, fitness studios and sports clubs have been closed and even an evening walk is made difficult in some places by a curfew. In short - the pandemic is not exactly making it easier for us to stay fit. Meanwhile, the large-scale British Journal of Sports Medicine study from the USA suggests that exercise is particularly important in these times: Almost 50,000 COVID-19 infected peopple were asked about their daily activitly level (looking back for the past two years before infection with SARS-CoV-2). The study was recently published. 14% of the respondents were physically inactive (≤ 10 minutes of exercise per week). 80% reported moderate activity (11-149 minutes of exercise per week) and 6% did steady 150 minutes of exercise per week. WEITER
By Ulrike
05/04/2021

Results of the PEGASUS study on APL-2

A recently published study from Leeds, England examines the effectiveness of the new drug pegcetacoplan on paroxysmal nocturnal hemoglobinuria (PNH). Pegcetacoplan has not yet been approved for PNH therapy in Europe, but approval is currently being examined by the European Medicines Agency (EMA). For this reason, we would like to briefly introduce the drug and the study to you and first take a brief look at the blood formation disorder underlying PNH in order to understand how Pegcetacoplan works:

Normally there are certain proteins on the surface of the red blood cells (erythrocytes), which transport oxygen through our body. Among other things, these regulate the immune system and prevent the erythrocytes from being broken down prematurely as they circulate through the body. At the PNHWEITER

By Ulrike
09/02/2021

Patients with stem cell transplants: study on sport and exercise

Heidelberg University is currently carrying out a research project in collaboration with the National Center for Tumor Diseases (NCT): Patients who have received a stem cell transplant are asked about their attitudes towards physical activity. Specifically, the aim is to determine how patients feel about physical activity during and after a stem cell transplant, how they perceive it and how well they feel advised in this regard. Above all, questions are asked about the situation before the start of the pandemic, when sport and exercise were perhaps easier and more diverse. As an association, we would like to support this study, because its aim is to adapt the offers of help and information materials on the subject of "Sport and exercise in stem cell therapy" more specifically to the wishes and needs of the patients. WEITER
By Ulrike
02/02/2021

RECOMMENDATIONS OF THE ULM UNIVERSITY HOSPITAL ON COVID-19 VACCINATION IN AA/PNH

A few weeks ago, vaccinations against the SARS-CoV-2 virus began in Germany. As announced in our February virtual group meeting, the Ulm University Hospital, as one of the most important AA/PNH centres in Germany, has now published a recommendation letter (German) on this topic. If you need assistance with details contained in the recommendation letter please email us at info(at)aa-pnh.org or give us a call: +49 30 549094080. We briefly summarise the most important contents for you below:WEITER
By Ulrike
07/12/2020

Pandemic Impact Survey on AA / PNH Patients

In July / August 2020, under the leadership of Priv.-Doz. Dr. Fabian Beier started the first round of a survey to record the effects of the SARS-CoV-2 pandemic on AA and PNH patients in Germany. The focus was on the availability of information on COVID-19 and delays in treatments. We were very pleased that the lichterzellen foundation and our association were included in the design of the survey.
The evaluation of the first round of questions showed that around 20% of the respondents had little or no access toWEITER
By Ulrike
01/10/2020

Results of RACE trial

The EBMT (European Society for Blood and Marrow Transplantation) conducts the RACE clinical trial to evaluate the combined therapy of equine ATG, ciclosporin and eltrombopag in patients with severe or very severe Aplastic Anaemia. "RACE" means "A prospective Randomized multicenter study comparing horse Antithymocyte globuline (hATG) + Cyclosporine A (CsA) with or without Eltrombopag as front-line therapy for severe aplastic anemia patients". Results of the trial (in the Netherlands by way of example) show good response rates in the patients who received all three medicines. In Germany, the trial must not be conducted because of missing admissions. However, we consider it to be important to watch the trial data in order to use it ind admission discussions with authorities.
By Ulrike
08/07/2020

Survey by the Aachen University Hospital on the consequences of the COVID-19 pandemic for AA / PNH patients

Since the current COVID-19 pandemic creates a lot of unrest and new questions arise every day, the University Clinic Aachen, under the direction of Priv.-Doz. Dr. Fabian Beier developed a survey (so-called Soci-Survey). In doing so, the clinic would also like to meet the wishes of many patients to collect and evaluate data on the current COVID-19 situation in order to learn about the effects of the pandemic on personal life and medical care as well as knowledge of its course and frequency of COVID-19 especially in patients with PNH and / or AA or dyskeratosis congenita (DKC).WEITER
By Ulrike
11/05/2020

DGHO guideline on coronavirus infection

in patients with blood and cancer diseases

 

**** updated on 05/11/2020 ****

The German Society for Hematology and Medical Oncology (DGHO) updated its guideline for coronavirus infection (COVID-19) in patients with blood and cancer diseases on May 11, 2020. In its guideline, the DGHO explains what SARS-CoV-2 exactly means, names the risk factors and gives advice on prevention and therapy, among other things. She deals with aplastic anemia under point 6.2.9, PNH under point 6.2.56. For further information on COVID-19, see also the information provided by Dr. Höchsmann made recommendations as well as our blog post .
By Ulrike
13/03/2020

Information on the COVID-19 pandemic for AA and PNH patients

 

UPDATE - the letter has been updated:

 

Letter of recommendation on Corona at AA and PNH as of March 25, 2020 (2 MB)

 

Miss Dr. Höchsmann from the center in Ulm, which specialises in AA and PNH, has put together information and assistance in dealing with the COVID-19 pandemic. Please follow the instructions and stay as healthy as possible!

 

Note: The websites listed in the letter are not linked, they follow here:

WEITER
By Ulrike
Show more
Loading new posts...
No more posts