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Alpha1 Germany eV.
This time we are putting the Corona news at the end of the newsletter, because we should give more space to other things in life.
During the dreary months, we diligently worked behind the scenes to raise awareness and prepare for the future.
In late autumn of last year, Alpha1 Germany launched the „WHO Air Quality Guidelines 2021 – Healthier air for all: A joint statement by medical professionals, health professionals, scientific societies and patient representatives“signed. We can all feel daily that air quality clearly has an impact on our lives as people with lung disease. Therefore, we are committed to improving the air we breathe.”.
Discussion: Advantages and disadvantages of telemedicine
Together with the German Respiratory League (Deutsche Atemwegsliga e. V.), the Federal Association of Pulmonologists (Bundesverband der Pneumologen, BdP), the Association of Pulmonary Clinics (Verband Pneumologischer Kliniken e. V., VPK), the Working Group on Lung Sports in Germany (AG Lungensport in Deutschland e. V.), and the eHealth Working Group of the German Respiratory League's Supporting Association (Förderverein der Deutschen Atemwegsliga e. V.), we at Alpha1 Germany discussed the advantages and disadvantages of telemedicine concepts and the implementation of video consultations in an online workshop in April 2021. The results were published in the Pulmonology (Thieme Publishing) published.
There are new podcasts since our last newsletter:
Episode 6: Alpha-1 and Psyche – Communication Part 2: Silence is not always golden – how good communication can succeed
In this podcast, continuing her series on communication, Ms. Tempel focuses on conversations involving other groups of people, beyond the typical family-patient relationship. She also addresses communicatively challenging situations, explaining them with examples and offering solutions. As a physician specializing in psychopneumology, Ms. Tempel provides practical guidance in these two communication chapters, enabling listeners to navigate even the most demanding situations.
Episode 7: Alpha-1 and Psyche – The Power of Resilience
In this podcast episode, Ms. Tempel discusses the frequently mentioned topic of resilience. But what exactly is it? And how can someone with a chronic illness utilize this mental resilience in their life? Ms. Tempel answers all these questions and more in this podcast. She also talks about the importance of self-efficacy and shows how various tools can be used to overcome future crises.
Episode 8: Lungs & Liver
In this podcast episode, Professor Strnad and his colleague Ms. Amzou from the Alpha-1 Liver Center in Aachen explain the liver changes that can occur in adults with alpha-1 antitrypsin deficiency. Professor Strnad's research team focuses on the liver health of alpha-1 patients and provides them with support and guidance. The team of experts also offers helpful lifestyle tips and information on risk factors, enabling patients to identify these in their daily lives and minimize risks.
The podcasts are a joint project of Alpha1 Deutschland eV and CSL Behring.
„"A communication guide for Alpha-1 caregivers"“
Are you already familiar with our new brochure „A Communication Guide for Alpha-1 Caregivers“?
This new brochure was created in collaboration with Ms. Tempel and can be found at our website It can be downloaded. A wonderful tool for everyone who cares for us so lovingly. Thank you to Ms. Tempel and all our caregivers!
In short
The coronavirus pandemic still hasn't let go, but spring is coming, and with it, falling infection rates. We want to look to the future with optimism: In a webinar at the end of January 2022, the American Alpha1 Foundation reported that, according to a survey in the Alphanet registry, 1,189 Alphas had been infected with the coronavirus, while 6,672 had not. This means that 12 of those registered there were infected.
- Alphas are not infected more often than others; in fact, it is slightly less than in the normal healthy population!
- Of the 1,189 Alphas with Corona, 74 were treated at home, 20 in hospital and 6 (71 people) in intensive care.
- Individuals with alpha levels likely have an increased risk of developing a more severe illness. However, a severe course of the disease is not automatically guaranteed by the deficiency.
These statements align with the data we collected. Of course, we must continue to be vigilant, as this also indicates. publication.
We are still waiting for figures specifically for the Omicron variant. Initial assumptions are emerging: Omicron appears to result in significantly fewer hospitalizations, at least among those vaccinated three times, and this likely also applies to those with pre-existing conditions. Unfortunately, the mortality rate among transplant recipients is higher than in the general population, but there is also good news: at the end of January, seven cases of Omicron infection among transplant recipients were known at Hannover Medical School (MHH), and none required intensive care (=> none died). We strongly recommend that all transplant recipients subscribe to the MHH newsletters. The last one was published in January. Hannover Medical School (MHH) also offers excellent information, including patient videos. The video is from December 13th. Organ transplantation & Corona: Current progress You can check at any time.
On Saturday, November 20, 2021, the 2nd Day on Organ Donation and Transplantation took place at the University Hospital Essen. All videos have been recorded.
New hope for transplant recipients (a suggestion from Heinz Dohmen), but also for other Covid-19 patients, is offered by a Antibody therapy, as reported by the University Hospital rechts der Isar of the Technical University of Munich (TUM).
Other news about Corona:
- What do different tests reveal about antibodies?As is so often the case, you only find what you're looking for.
- Are rapid tests accurate enough, or is a PCR test always necessary? Fortunately, most tests are reliable, but unfortunately not all.
- How effective the Covid-19 vaccines are over time is shown by a Summary the ELF on the research findings published in the New England Journal of Medicine.
- A good overview of possible medications for Covid-19 is provided by the Pharmacy Review. The Pharmaceutical Journal indicates a quick pill after infection.
As always, we are happy to provide information, but in the event of an infection, you should discuss the best course of action with your doctor. They are not only familiar with the studies, but hopefully also know you well.
That CureVac withdrew its first vaccine from the approval process and Novavax You probably already know that it has received approval. And you hopefully also know that the booster vaccination is important. Whether a fourth vaccination is necessary is currently under discussion.
Our 2022 Annual General Meeting
But since we always end on a positive note, we would like to take this opportunity to remind you of our virtual members' meeting on April 29, 2022, and hope to see you there.
We are also resuming plans for a real, in-person meeting in 2023. Further information will be provided in due course.
