Author: Ulrike

23/03/2022

Update of PNH guideline

Photo: psdesign1_fotolia

 

Guidelines are summaries of the current scientific knowledge about a disease – in addition to a complete list of possible symptoms and the most targeted diagnostic methods, you can read about the best possible treatment options according to the current state of knowledge. They serve primarily as a non-binding guide for doctors, but also contain interesting information for patients. Every now and then, guidelines are updated so that the findings of new studies can be incorporated into everyday medical practice - this is exactly what happened this month for the PNH guideline of the German Society of Haematology and Medical Oncology (DGHO) . The last version was still from November 2019 and a revision was necessary in particular to bring recommendations on the use of new drug therapy options up to the status of 2022: Specifically, we are talking about pegcetacoplan, the new C3 complement inhibitor, which has been approved in the EU since December 2021 under the trade name Aspaveli® and, according to the manufacturer Swedish Orphan Biovitrum AB (Sobi), is expected to be available as a therapy option in Germany from April 2022. WEITER

By Ulrike
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 seriesWEITER
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
30/09/2021

Interview on the work of self-help

Interview of the Cancer Survivor initiative with Rainer Göbel about self-help and blood cancerRainer Göbel in an interview with Stephan Pregizer © Cancer Survivor
 

Some people may still have the idea that self-help is nothing more than sitting in a circle of chairs and only talking or even moaning about the topic in which the corresponding self-help group is concerned, in our case about illnesses.

In fact, one of our core tasks is to enable patients and their relatives to exchange ideas with one another, be it in the said circle of chairs, when visiting a restaurant together, in virtual meetings or in some other way. But our range of tasks is diverse and we offer much more than just an exchange. We publish information material, have information stands at events, attend congresses and are involved in (political) lobbying. Rainer Göbel, member of our board and chairman of our umbrella association German Leukemia & Lymphoma Aid (DLH), gives an insight into the work of self-help using the example of blood cancer in an interview with Stephan Pregizer from the Cancer Survivor initiative - take a look for yourself:

to the video

   
By Ulrike
05/09/2021

Third vaccination seems to increase protection against corona in immunosuppressive therapy

Syringe with vial for vaccination © weyo

Vaccination, vaccination, vaccination - there are few other topics that dominate the media, politics, but also our conversations with family and friends so much at the moment: Rightly, because the development of vaccines against the coronavirus and the increasing "vaccination coverage" of the population feed the hope of overcoming this crisis at some point.

For a few months, however, there have been indications that the corona vaccination does not work equally well for all people: A study from March of this year found that people taking immunosuppressive therapy are less able to develop protection against a COVID-19 infection than people without this medication. This can be easily explained:WEITER

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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