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
In connection with the Day of Rare Diseases , the Ulm University Hospital held another AA / PNH patient seminar on March 6th, 2021. Due to the pandemic, it took place in virtual form for the first time and also attracted numerous participants in this format.
The lectures of the varied program are available for download on the website of the Center for Rare Diseases of the Ulm University Hospital .
Do you know this feeling? Wake up in the morning, maybe it smells like coffee, maybe breakfast is already ready and someone gives a bouquet of flowers or a first gift - someone calls and congratulates, a serenade at work or among friends and at the end of the day a nice, big one Celebrate with ... stop! It's February, it's the year 2021 and the corona pandemic still has a firm grip on our country and the world. The first lockdown was decided almost a year ago and it is very likely that you have already experienced it: It is your birthday in the pandemic .
Our association Aplastic Anemia & PNH eV also celebrated its birthday last week, namely its 20th anniversary. For known reasons, however, there was no question of “celebrating” in this context - even if we did not give up hope of being able to make up for it one day. Until then, however, we don't want to simply skip the club's anniversary: It's a wonderful opportunity to review the past 20 years. Perhaps you have been with us from the start, perhaps you only became aware of the association a few weeks ago: We are very pleased that you are part of it, we would like to thank you for your interest, your questions and suggestions, and we would like to take a look back at you invite you to 20 years of AA & PNH eV.WEITER
Our association Aplastic Anemia & PNH eV, AA & PNH eV for short, now has its own page on Facebook ! There we present the association and its history. We also point out events such as group meetings and patient days as well as information on the diseases and current topics.
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