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Alpha1 Germany eV.
We cordially invite you to this year's general meeting of Alpha1 Germany e.V. on April 29, 2022 at 6 p.m. – hopefully for the last time online in the form of a Zoom conference (exclusively digital). Those interested in participating in the online conference should register by April 21, 2022 via the following email address: mgv22@alpha1-deutschland.org. You will then receive your login details.
Not yet a member? You can find the application form and the statutes here. here.
Following the general meeting, Dr. Alexander Rupp, head of the Alpha1 Center in Stuttgart and head of the Pneumological Practice in the Center (PIZ), will speak about the specific treatment of Alpha-1, COPD and asthma He will give a presentation and is available to answer questions, which may be submitted in advance.
Why is membership important? You can find most of the information on our website or in our newsletter anyway. Your membership strengthens us and our work. A patient organization for a rare disease certainly receives more attention when its membership exceeds 1,000; that's our goal, and we need you to achieve it!
Singing for lungs and mind
Spring is fast approaching, are your emotions also on a rollercoaster ride? Sometimes spring fatigue overwhelms us, and then suddenly they're there: spring fever, complete with a song on our lips. Ms. Tempel explains what this emotional carousel can do to you on her [website/platform name]. HomepageTry entering the search term "„Sing“One. Did you know that this area has been scientifically researched? More importantly, it's fun and, simply put, it trains your lungs!”
The Easter tip at the end of the newsletter also helps against spring fatigue.
Heavy food prepared simply
No, we're not talking about food. We're talking about palliative care. Our first thought is usually the end of the illness – death. It's not something we like to think about. Yet, two experts, Dr. De Zeeuw and Dr. Delis, do just that in the Boehringer Ingelheim podcast. on Spotify or Apple Podcasts.
Absolutely worth listening to and not at all heavy going!
Substitution in the home environment
Many patients are waiting for news about how substitution therapy at home will continue. Unfortunately, we don't have good news on this; or rather, we have... no News. As of March 31, 2022, the Grifols home infusion program has been discontinued, supply shortages at CSL Behring are ongoing, and we are no longer the country with the best possible supply. The USA has taken an important step with the Introduction of a John W. Walsh Home Infusion Act We've done it! Unfortunately, we're not quite there yet. Of course, we'll let you know if there are any updates.
News about Corona
The measures to contain the coronavirus are being relaxed or even lifted. This leads to legitimate questions: How should one behave now? Has my personal risk increased? What should I continue to do to protect myself? Many people continue to wear masks, and increased hygiene measures should now be part of everyday life – not just during the coronavirus pandemic.
You can find out what our member Jürgen Frischmann thinks about this in his interview with t-online.
We should continue to encourage friends and acquaintances to get vaccinated, as this remains the best protection against severe cases – even for us Alphas. There are now many reports from Alpha-1 patients who have recovered from a Covid-19 infection. Fortunately, the initial assumption that our risk is elevated, but that an infection does not automatically lead to a severe case, is proving true.
Some individuals have already received their fourth vaccination. The Standing Committee on Vaccination (STIKO) recommends a second booster vaccination for people aged 70 and over, residents and those receiving care in nursing facilities, people with immunodeficiency aged five and over, and staff in medical and nursing facilities. For high-risk groups, the second booster vaccination should be administered no sooner than three months after the first booster vaccination with an mRNA vaccine. Staff in medical and nursing facilities should receive the second booster vaccination no sooner than six months later. People who have had a SARS-CoV-2 infection after the first booster vaccination are not recommended to receive a further booster vaccination.
However, it's advisable to wait and see for children without immunodeficiency. Currently, experts in Germany see no reason to administer the second booster vaccination to children and adolescents (and if they do, it should be with a significantly longer interval than for adults).
From a training session on Covid-19 in children, we would like to share the following quotes with you:
- Prof. Dr. Reinhard Berner, Dresden: „Conclusion: The primary disease burden from COVID-19 in healthy children and adolescents is low. PIMS occurs in approximately 1 in 4000 cases, generally resulting in rather severe illness, but with a good prognosis. Long Covid is still difficult to assess, but is very rare, especially in young children.“
- Prof. Dr. Fred Zepp, Mainz: „We should always keep in mind that we cannot necessarily solve the problem of adults who are insufficiently vaccinated and have a higher risk by imposing more and more rules or measures on children that they do not actually need for their health and their future.“.
Data from a survey conducted by the DGPI (German Society for Pediatric Infectious Diseases) revealed (as of March 6, 2022): 21 deceased patients (<18 years) with a confirmed COVID-19 infection, of whom 10 died from COVID-19, 6 in a palliative care situation, 3 with unknown causes, and 2 from other causes of death. Of the 21 patients, 16 had a serious underlying condition.
Those who want to delve deeper can find more information on the website of DGPI We will provide information about results from the registry/survey. Ideally, we would all be safe with the vaccination and the fear of infection would be over; unfortunately, this is not the case., Deutschlandfunk explains it very clearly..
The sentence in the article „Only vaccinated individuals at risk become seriously ill.“The information from the pharmaceutical journal is not reassuring. It lists risk factors that unfortunately often apply to us Alphas. At the end, a recommendation is given: „Furthermore, in the event of an infection, they should receive medication that can prevent a severe course.“ What this might mean is explained to us by the…” Article about the anti-Covid pills Paxlovid and Molnupiravir on Deutschlandfunk radio.
But when will we know if we've been infected? How accurate are rapid tests? Unfortunately, we hear a lot of conflicting information that makes us uncertain. The web app provides a solution. www.schnelltesttest.de Developed by scientists from Ulm. Simply scan the barcode of an antigen rapid test – and the website immediately shows how well the product detects infected individuals with very high viral loads as well as with all viral loads. The whole thing is based on data from the Paul Ehrlich Institute ( „"Comparative evaluation of the sensitivity of SARS-CoV-2 rapid antigen tests"“ (as of April 1, 2022). Since the application is web-based, downloading an app is not necessary. It only requires permission to use the smartphone's camera to scan the barcode.
In the coming days, another very dangerous time is approaching. No, we're not talking about the terrible war in Ukraine, nor are we talking about the pandemic again. We're talking about... Easter. We're talking about melt-in-your-mouth, delicious chocolate that slowly and steadily finds its way onto our hips. But there are ways to do this! The following tips can help you have a wonderful and healthy Easter:
- Definitely hide the eggs outside; the fresh air will do them good.
- Hide the eggs individually, not in a nest. This way, you'll have to bend down for each egg, and the recipient will also have to bend down properly. The better the hiding place, the more bending the searcher will have to do.
- Buy dark chocolate; even amounts as small as 7 to 20 grams of dark chocolate have a positive effect, for example, on blood pressure. Dark chocolate is rich in flavanols, magnesium, iron, calcium, beta-carotene, and vitamins E, B1, B2, and niacin. The higher the cocoa content of the chocolate, the higher the concentration of these beneficial ingredients.
- Drink green tea before meals; the tea boosts fat burning and performance.
- Take a walk after eating, as far as your health allows.
- Sing a cheerful song, e.g. Stups, the little Easter bunny
We wish you and your families a Happy Easter!
Photo credits: Counter: Angel_AMX/shutterstock.com // Illustration of people wearing masks: Angelina Bambina/shutterstock.com // Easter eggs in a meadow: photohunter/shutterstock.com // Microphone: Christoph Kadur/shutterstock.com
