Virtual General Meeting & Virtual Children's and Youth Day 2021
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Alpha1 Germany eV.
A personal note
Following a successful first virtual members' meeting on April 23, we would first like to thank you for the trust you have placed in us. We will continue to work with great enthusiasm to improve the lives of people living with this condition.
…and as is so often the case, after the event came the next event, and we held our virtual Children's and Youth Day on May 1st. The presentations were recorded, and the first one is now available on our YouTube channel: Update on liver involvement in alpha-1 antitrypsin deficiency by Malin Fromme (UK Aachen). Another presentation by Prof. Ganschow will follow shortly.
And speaking of YouTube: Ms. Tempel has created a training video for us on the topic of Alpha-1 and the psyche. It's such an important topic, because every Alpha knows the low point after diagnosis, from which one first has to climb out. Ms. Tempel has been supporting us for many years and always lends us a hand to help us get back on our feet and straighten our crowns.
It's worth watching the video several times:
The Alpha1 Podcast
And when we break new ground, we explore all possibilities: We can now do podcasts too!
In cooperation with CSL Behring, we have released the first two podcasts, and three more will follow shortly. We already have a follow-up series in the planning stages, and as a newsletter subscriber, you will of course always be promptly informed about the next Alpha-1 podcast.
You will also find all links and information here, of course. also on our homepage.
From science and research
A new edition Alpha-1 Antitrypsin Deficiency and Substitution Therapy – Current Developments and Clinical Significance (UNI-MED Science) Hardcover – April 8, 2021 from Andreas Rembert Koczulla (Author) has published a good reference book; at that price, it could also be a nice little "thank you" gift for your doctor?
And if you the book Order via smile.amazon.de for a good cause, because nIt's never been easier to do good! Support Alpha1 Germany – thank you!
You can find more information about AmazonSmile here. on the internet.
The ELF has a new Factsheet a publication on alpha-1 antitrypsin deficiency, which is also available in German.
A brief preview: From the Alpha-1 Research We will report on this in the next newsletter.
Latest news on Covid-19
Good news: On April 29th, BioNTech received approval for its vaccine for all Ages 12 and up An application has been submitted to the EMA (European Medicines Agency). Researchers see the vaccination of adolescents as an important step in combating the pandemic. This would mean that the first vaccinations could take place as early as June/July.
In our last newsletter, we reported on the use of alpha-1 antitrypsin in COVID-19 patients (University of Ulm). Below is another publication, this time from Saarland, led by Prof. Bals. The authors also conclude that AAT could be significant in the treatment of COVID-19 due to its antiviral and anti-inflammatory activity. Both intravenous and inhaled AAT were tested.
Of course, we are also following the news that an asthma inhaler can help with Covid-19, which ELF summarizes the study well in a few understandable sentences. and also mentions the link to Original study.
Prof. Klaus Rabe, head of the Lung Clinic in Großhansdorf, views the study critically, saying on ZDFheute, among other things: "This article cries out for a larger study design and can really only be read as a starting point for further studies.".
The best method is obviously still vaccination, and you can find information about the progress at the RKI (Robert Koch Institute): Digital vaccination rate monitoring for COVID-19 vaccination
And how did you feel after the vaccination?
The data on the possible side effects Data are collected by the relevant authorities in the European member states and forwarded to the EMA. The more vaccinated individuals share their experiences with the vaccination and its effects on their illnesses, the better the knowledge base and the resulting potential recommendations for action. Official website of the Federal Institute for Drugs and Medical Devices (BfArM) and the Paul Ehrlich Institute (PEI) You can easily and anonymously enter your information. (Incidentally, not only regarding vaccines for protection against COVID-19!).
This is also important to us
Please continue to visit your doctor, attend preventative care appointments, and get all necessary routine vaccinations.
And especially for your next doctor's visit a little tipThe patient-doctor dialogue is the crucial foundation for good medical treatment. Here's what patients can do to ensure good communication:, You can find out more in the following article and also in the video with the doctor Dr. Johannes Wimmer.
In conclusion a small, simple recipe, that will definitely sweep away your spring fatigue:
- Pitcher of water (still or sparkling, depending on taste)
- ice cubes
- Juice of one lemon (or add slices of an organic lemon)
- 1-2 sprigs of fresh herbs (e.g. lemon balm or lemon verbena)
- Add some honey or syrup to sweeten to taste – but it's also fine without.
- Let it steep for a while and add a generous splash of ice-cold ginger ale just before serving.
