Marion Wilkens, Alpha1 Germany eV, as published in Alpha1 Journal 1/2022.

Together with the research panel (JamesLindCare), we conducted a survey on the quality of life of Alpha-1 patients during the pandemic. Thirty-four patients participated in 2021/2022; 21 completed the survey in full and are subsequently counted as 100 percent. Although this data can only provide a small insight into the experiences of people with lung diseases, specifically Alpha-1 patients, it nevertheless reflects the trends of nationwide surveys on quality of life during pandemics (see the survey by the Robert Koch Institute).

The results are as follows:

Our daily lives were significantly impacted by the Covid-19 pandemic, even after we had fully vaccinated. Alpha-1 patients are familiar with this, as many withdrew from public life, behaved cautiously, and protected themselves as best as possible.

The results in detail for the predominantly 41-60 year old (67 %) and predominantly male participants (62 %):

• With the exception of three individuals, all were diagnosed with alpha-1 antitrypsin deficiency (86 %)
• 100 of the respondents had been vaccinated at least twice.
• In the first year of the pandemic, the health status of 43 % remained unchanged, in 10 % it deteriorated significantly, in 33 % it deteriorated somewhat, and in 14 % it even improved slightly.
• 43 patients with % reported having no exacerbation in the past year: five had impaired lung function, seven had increasing shortness of breath, and five also had increased coughing/mucus production (multiple responses were possible here).
• More than half of the lung patients were afraid of contracting the disease (57 %), 38 % were worried that the lung disease would worsen.
• Last year, 95 people with type 1 diabetes visited their family doctor for various reasons, but only 81 visited their pulmonologist (who underwent, among other things, a lung function test). 24 people with type 1 diabetes received hospital treatment.
• 29 people with % visited their family doctor more often than before the pandemic, 10 people with % visited less often.
• 19 people with type 1 T3 visited their pulmonologist more often than before the pandemic, 14 people with type 1 T3 visited less often.
• 52 people with type 1 diabetes felt protected by the vaccination and dared to go out in public again, 14 people with type 1 diabetes were unsure and 33 people with type 1 diabetes felt unprotected.
• 71 % were afraid of further mutations of the coronavirus.
• 57 % attended all appointments at the hospital, 24 % avoided hospital visits despite acute problems, and 19 % only postponed scheduled appointments.
• 19 % say they have fears about the future

Similar results and additional information on therapy adherence were obtained from a survey conducted by the company Grifols among AlphaCare patients, which will be published shortly in the journal Pneumologie.

Thank you for your participation, which made it possible to present these interesting figures. We also encourage you to continue participating in surveys relevant to Alpha, which we will feature on our homepage banners. Thank you again for your future cooperation!

AlphaCare service team (Grifols) 

Last year, we conducted a survey to find out how you fared during the COVID-19 pandemic. With over 250 responses, this survey was a huge success, and we are delighted that the results were recently published in the journal "Pneumologie." We would like to sincerely thank you for your participation in the survey, as this would not have been possible without you.

If you are interested in the results of this survey, you can find a summary at the following link. Publication on the homepage of the journal Pneumologie.

We are aware that the situation in this survey (March 2021) is no longer comparable to today's circumstances. Many of you have since been vaccinated, and the Omicron variant of the virus has a firm grip on the pandemic. Therefore, we would like to ask you, in a second anonymous survey, to give us an insight into how you have fared more than a year after the first survey. However, even if you did not participate in the first survey, we would be very pleased if you would answer the questions.

To make your participation easier, we are providing the questions digitally this time. Below you will find the link that will give you access to the anonymous survey. We would also like to publish these results in a scientific journal. We would be very grateful if you could take a few minutes to answer the questions.

Click here to take the survey:

For questions and further information, please contact the Grifols AlphaCare service hotline on the freephone number 0800 100 3948 (Monday to Friday from 8:00 am to 8:00 pm).

Best regards

Your AlphaCare service team

Authors: Dr. Heinz Stutzenberger and PD Dr. Timm Greulich

For several weeks now, the drug Paxlovid from the US pharmaceutical company Pfizer has been available in Germany for high-risk patients with COVID-19, and it can significantly reduce severe cases and deaths in this patient group.¹. In this context, high-risk patients include, among others, those with lung diseases, and thus also Alphas whose Alpha1 antitrypsin deficiency has already manifested itself in clinically significant lung abnormalities.

In phase 2 and 3 clinical trials with paxlovide at unvaccinated people It has been shown that the risk of a severe course with hospitalization, intensive care treatment or death is reduced by almost 90% compared to the placebo group if treatment is started sufficiently early (at the latest on the fifth day after the onset of the first symptoms, preferably on the third day).². On day 5 of treatment, the decrease in viral load was 10 times greater than in the placebo group. Observed side effects (loss of taste, diarrhea, vomiting, and headache) were mild and temporary. In another study, which also included vaccinated individuals, the results were only marginally worse; however, since the study results have not yet been published in detail, the influence of vaccination status on the treatment outcome cannot yet be determined. Due to the overwhelmingly positive results, the drug received provisional emergency use authorization in the USA. Such authorization is granted when the results in clinical trials are so compelling, even before the formal completion of all pre-defined evaluation steps, that it would be ethically unacceptable to withhold treatment from patients because the already identified benefits far outweigh any potentially remaining hidden risks.

According to the Association of Statutory Health Insurance Physicians, the drug has been approved in the EU since the end of January.¹, Initially, 40,000 treatment units were ordered for Germany. According to the German Medical Journal (Ärzteblatt) of August 2, 2022, physicians will now be able to prescribe the COVID-19 medication Paxlovid without complications.³. The medication will be provided through pharmacies.

However, not all high-risk patients can benefit from the positive effects of this medication: while the Next toWhile the effects (as mentioned above) may appear less critical, they can lead to massive problems. ChangeInteractions with certain other medications may occur. These arise because a component of paxlovid can affect the absorption and/or breakdown of the active ingredients of these medications, resulting in an inappropriate drug concentration in the patient's blood. The paxlovid package insert therefore lists a longer compilation of ingredients and medications that are incompatible with paxlovid, which are discussed below. in excerpts is reproduced⁴:

• Alfuzosin (for the treatment of the symptoms of an enlarged prostate)
• Pethidin, Piroxicam, Propoxyphen (for pain relief)
• Ranolazin (for the treatment of chronic chest pain [angina pectoris])
• Neratinib, Venetoclax (for the treatment of cancer)
• Amiodarone, Bepridil, Dronedarone, Encainide, Flecainide, Propafenone, Quinidine (for the treatment of heart disease and for the correction of cardiac arrhythmias)
• Fusidic acid, rifampicin (for the treatment of bacterial infections)
• Carbamazepine, phenobarbital, phenytoin (for the prevention and control of seizures)
• Colchicine (for the treatment of gout)
• Astemizole, Terfenadine (for the treatment of allergies)
• Luradison (for the treatment of schizophrenia)
• Pimozide, Clozapine, Quetiapine (for the treatment of schizophrenia, bipolar disorder, severe depression and abnormal thoughts or feelings)
• Dihydroergotamine and ergotamine (for the treatment of migraine headaches)
• Ergometrine and methylergometrine (to stop excessive bleeding that may occur after childbirth or abortion)
• Cisapride (for the relief of certain stomach problems)
• St. John's wort (Hypericum perforatum) (a herbal remedy for the treatment of depression and anxiety)
• Lovastatin, simvastatin, lomitapide (to lower cholesterol levels in the blood)
• Avanafil, Vardenafil (for the treatment of erectile dysfunction [also known as impotence])
• Sildenafil for the treatment of pulmonary arterial hypertension (high blood pressure in the pulmonary artery)
• Clorazepate, diazepam, estazolam, flurazepam, triazolam, midazolam Taken orally (to relieve anxiety and/or sleep disorders)

In the aforementioned and more For medications not listed here, the attending physician must decide on a case-by-case basis whether these can be discontinued in favor of taking Paxlovid or whether another medication against COVID-19 can be used.

Alpha1 and Covid-19: Current survey results, May 2021

Marion Wilkens, Chairwoman Alpha1 Germany eV.

The topic of Covid-19 will certainly continue to affect us for some time and cannot be entirely omitted from this journal. The 7-day incidence rate is declining everywhere and has finally fallen below 9 in all federal states (data from the RKI, as of June 30). The number of vaccinated individuals is rising. On June 29 alone, 886,986 vaccine doses were administered in Germany. This means that 30,352,916 people (36.5% of the total population) are now fully vaccinated. In total, 45,307,672 people (54.5% of the total population) have received at least one vaccine dose.

Most of the symptomatic individuals we spoke to have already received their vaccinations and now feel somewhat more relaxed. But the questions about vaccinations continue, because now our children (from age 12) also have to grapple with the issue of vaccination.

Since May 28th, the vaccine from the German manufacturer Biontech and its US partner Pfizer has been approved by the European Medicines Agency (EMA) for children and adolescents aged twelve and over.

As is so often the case, good news is unfortunately accompanied by bad news: The German Pharmaceutical Journal reports that vaccination with BioNTech's Covid-19 vaccine Comirnaty® can apparently trigger myocarditis (inflammation of the heart muscle) in young men. According to a report from Israel, the complication is very rare and usually temporary.

With children, weighing the benefits and risks is more difficult than with adults. You should discuss your child's individual risk with their doctor. More data from other countries where more young people are already vaccinated will certainly follow soon. We cannot currently give a general recommendation. However, we tend to favor vaccination – at least for the PiZZ children.

In Journal 1/2020, we reported on the survey "Covid-19 Infection in Individuals with Alpha-1 Antitrypsin Deficiency," which we conducted via our website. Today, we would like to analyze the data again and share it with you. The data is encouraging; many thanks to everyone who participated.

Further data from the survey

• 201 (96.6 %) of the survey participants are affected by alpha-1 antitrypsin deficiency.
• The distribution of the genotype of the 201 individuals can be seen in Figure 1.
• Of the 201 people, 48.8% are receiving % substitution (98 people).
• 118 of the participants are female (58.7 %).
• The age distribution of the 201 participants can be found in Figure 2.
• The majority (79.1 %) came from Germany, but the countries Switzerland, Austria, Portugal, Belgium, Spain and Italy were also represented.

We then looked back again and this is what we found:

• Of the 17 infected with COVID-19, 6 were PiZZ, 6 were PiMZ, 2 were PiSZ and 3 had rare mutations.
• Of the 17 people who reported having COVID-19, 14 had their diagnosis confirmed by a medical test.
• Four infected people are receiving substitution therapy.
• 10 are female and 7 are male.
• 1 person aged 0-20, 6 people aged 21-40 and 10 aged 41-60.
• Five of those infected were in hospital.
• One of the 14 confirmed COVID-19 patients required mechanical ventilation.

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

Impact of the pandemic on your doctor visit behavior

Alpha1 Germany eV.

Dear person affected by Alpha-1 Antitrypsin Deficiency,

We request your assistance. While alpha-1 antitrypsin is thankfully available in sufficient quantities for the German market (we have confirmation), current supply difficulties are limiting treatment options for substitution therapy. on the one hand, and the soon-to-be-discontinued home therapy on the other. Limited. This is a setback for us Alphas, and it worries us, especially given the rising number of COVID-19 cases. We are actively discussing this with those responsible and working together to find solutions. To better assess the current situation we patients are in, we have developed this very short survey together with the Alpha1 advisory boards and Alpha1 centers. Your responses will provide a more accurate picture of whether the supply shortage and the current pandemic situation are affecting your doctor visit behavior. This, in turn, gives us arguments to continue advocating strongly for home therapy and self-therapy at home; we want the best possible and individualized treatment!

Does alpha-1 antitrypsin inhibit SARS-CoV-2?

Alpha1 Germany eV.

Potential hope for the treatment of Covid-19? What does alpha-1 antitrypsin have to do with it? A study from Ulm is drawing considerable attention to alpha-1 antitrypsin:

Alpha-1 antitrypsin inhibits TMPRSS2 protease activity and SARS-CoV-2 infection.

The results of the study are not entirely surprising to some. We knew that some patients treated with AAT had a better outcome as a result, but there was no written documentation of this yet. The most important points can also be summarized below. Read more in the press release from the University of Ulm.

Vaccine development is progressing: Another vaccine against Covid-19

Meanwhile, a further vaccine against Covid-19, This time from Johnson & Johnson, approved by the EMA.

What's special about this vaccine is that it's supposed to be fully effective after just one dose. Furthermore, the Johnson & Johnson vaccine is stable for at least three months at temperatures between two and eight degrees Celsius. Like the AstraZeneca vaccine, this is a vector vaccine. It will likely not be available in Germany until mid-April.

Vaccination is the best way to combat the pandemic. Due to numerous inquiries, we would like to reiterate: All vaccines are equally suitable for us Alphas! (Transplant recipients are the only exception here). AstraZeneca (see last newsletter) is also among the suitable vaccines, which can reduce severe cases by almost 100%.

Vaccine reactions, even strong ones, show that the body is dealing with the pathogen. According to Prof. Michael Schäfer, Director of the Leipzig Institute of Pharmacology and Toxicology, this is a sign that the foreign protein is being incorporated into the body. This is also the desired effect, as it means something is actually happening in the body.

During a visit to an aerosol conference, we learned that it is considered beneficial to vaccinate older people with AstraZeneca primarily because of its particularly high mitigation effect in severe cases. mRNA vaccines, on the other hand, should be administered to younger people, as they combat infectiousness and thus stop further transmission more quickly.

A brief note regarding the reported cases of thrombosis: Please always consider the case numbers; they are extremely rare! And the good news is, they are treatable (please watch for headaches and swollen extremities between the fourth day and two weeks after vaccination). Treatment involves a plasma product that patients with hemophilia are already familiar with.

Personal account: Unexpected things often happen – or my personal Corona vaccination experience

Gaby Tronnier

Friday evening. I'm entering my working hours from my home office when three emails arrive in quick succession. I glance over at my computer and see that my team leader, Heike Isensee, has written. In the preview pane, I read the subject: Vaccination. Huh? What's next?.

I start reading. My blood pressure rises. I can hardly believe it. The long-awaited prick – it's almost here. So, I immediately get to work. Armed with my phone and coffee, I begin. Speaking of coffee, Mr. Kretschmann, you can certainly count on an invitation for coffee as a thank you.

I launch my internet browser. The command line of all-knowing Google appears. With trembling hands, I type www.impfterminservice.de. The registration form appears instantly. To quote Boris Becker's advertising slogan: "I'm in." Incredible, I think, and so beautifully clear.

Using the mouse, I click the small downward-pointing arrow in the upper of the two framed fields. The individual federal states appear, and I select Baden-Württemberg. I select Meßstetten as the vaccination center in the same way. My selection is then displayed in the "Detailed Information" field. I'm asked to note this down. I ignore this prompt, thinking I can remember it later. I click the magenta button (like the one used by Telekom for "Help Here") to proceed to the vaccination center. I'm asked whether my eligibility for a COVID-19 vaccination has already been verified, i.e., whether I have a referral code. I truthfully answer no, which I can do by clicking on the designated field.

A seemingly endless text, riddled with paragraph symbols, greets me on the next page. Ugh, heavy stuff. I bravely battle my way through the jumble of letters and stop at paragraph 3, section 2. There it says: "...people with chronic illnesses such as COPD..." It's there in black and white, smiling back at me. I happily realize I'm one of the lucky ones. I answer "yes" to the question about belonging to one of the mentioned groups, then type in my age and finally run the quick check.

Reaching the next screen, I think, "Now it's getting serious." I have to come clean. Slowly, I type my email address into the designated field—making sure I don't make a mistake. Then the system asks for my mobile phone number. Luckily, it's so well designed that neither the German country code (+49) nor the first digit of the mobile number (always 0) needs to be entered. I essentially enter the rest of my mobile number and request a transfer code.

Almost instantly, a verification PIN appears in my phone's message list. It's marked with the note: "Valid for 10 minutes." Now I need to act quickly, no time to waste. Who knows what else I might need to do? So I position the mouse cursor in the PIN entry field and copy the PIN from my phone. Clicking the VERIFICATION button takes me to the next page.

Oh no, I did something wrong. I've seen this page before. Relieved, I notice a pop-up at the top of the page prompting me to check my email. So I switch from my web browser to my email program. Damn, nothing's arrived, and I only have 10 minutes. Then it hits me. To see the new email immediately, I need to use the "Send/Receive All Folders" function (or press F9 in Outlook). I press F9, and instantly an email appears from the sender noreply@impfterminservice.de.

Great, this is how it should continue. The email I just opened contains a referral code. Below it, I click the "BOOK APPOINTMENTS" button and am getting much closer to my vaccination appointment. At the same time, I'm informed that the two necessary vaccination appointments should be booked together. Now that's what I call practical! And even though I've been working on a computer every day my entire professional life, I suddenly feel quite excited when I click the "SEARCH APPOINTMENTS" button.

Several rows of possible appointment pairs are displayed. By clicking on the circular box next to the date row, I immediately select the first appointment on Tuesday at 10:15 a.m. I can't seem to keep up with my thoughts.

The next page asks for my personal information. I eagerly fill it out. Then I confirm my vaccination appointment by clicking the "BOOK APPOINTMENT" button. Great. Onward, I'm not quite finished, because I still need to click the "CONFIRM EMAIL" button. This announces that I will receive the booking confirmation after successful confirmation.
So I switch back from my internet browser to my email program and press the F9 key. Ping, pling. The header reads "Confirmation of appointment booking." For once, I'm impressed by German precision. I quickly open both emails and send them to the printer.

I jump up, clench both fists, and shout "Tschacka!" My lung exercise coach, Peddar, would definitely comment on that movement. Unbelievable. I'm as happy as a clam, like a rock in tea, just like a true East Frisian. Now, first, I need to catch my breath and stay calm. Think. What else needs to be done? Dig out my vaccination record, put my ID card and health insurance card in a folder. Just don't forget anything.
Oh yes, our dear Heike also gave us the tip to have our family doctor issue a certificate of our vaccination eligibility according to §3, paragraph 2. The informal confirmation is quick to write and print. We just need to get it signed on Monday.

Done, only 4 more sleeps.

After dinner, strange thoughts keep creeping into my mind. I just don't want to get sick beforehand. Hopefully, it won't be a migraine attack. My body simply has to cooperate, so the whole weekend is dedicated to plenty of exercise in the fresh air: cycling, running, and long walks, topped off with an ice cream. To celebrate. Luckily, I can still go to work on Monday, thus keeping these bad vibes at bay.

Tuesday morning, 7:00 a.m., time to get up. Hurray, no migraine. What could possibly go wrong now? My husband and I enjoy our breakfast together. Afterwards, I retreat back to my home office. Then I make us sandwiches and prepare drinks, because according to the press reports, the wait can be quite long. Apparently, there are people—whom I would personally compare to those so-called "towel-laying" tourists—who position themselves with the Luma magazine in front of the Paul Horn Arena in Tübingen in the middle of the night. Unbelievable.

So we're well-prepared and set off. True to the German motto "punctuality means 5 minutes early," we arrive at the access road to the Meßstetten military base. We continue very slowly. Many empty barracks and deserted roads. I'm just waiting for hay bales to fly around our ears at any moment, like in a Western.
Fortunately, nothing of the sort happens and after about a kilometer we reach the former officers' mess.

Well, this is a nice place to get vaccinated, I think. We park and are surprised to find hardly any cars, and the expected queue consists of just 14 people, mostly young. Huh, how does this work? The mystery is immediately solved. A woman appears at the door, calls the next group with an appointment at 10:10 a.m., and leads them into the casino. Oh, how wonderful, for once I don't have to stand in line during the pandemic. My husband and I enter the hallowed halls with the very next group. We are immediately instructed to always follow the yellow arrows on the floor.

Everything looks very tidy. No helpers, doctors, or security personnel cross our path to the hand sanitizer dispenser and subsequent temperature check. It's a shame, really, because a little refreshment with snacks and cold drinks wouldn't be bad either. We dutifully follow the yellow arrows and arrive at registration. After handing over my appointment confirmation and ID, I'm asked whether I want to be vaccinated for professional or medical reasons. I answer for medical reasons and have an unidentifiable symbol drawn on my form.

Turn left, keeping your eyes on the ground, and continue on. After a few meters, a helper greets us and asks us to take a seat in the large hall. We go in, sit down, and suddenly there's a crackling sound. A deep voice rings out, and a speaker appears on the large television on the wall. A documentary informs those present about the pandemic, the coronavirus, the various vaccines, and how they work. Mine, from AstraZeneca, is also included. It's based on common cold viruses that normally infect chimpanzees. These viruses are supplemented with a part of the genetic material of SARS-CoV-2. So, practically "disguised." This tricks the body into thinking it's infected, thus triggering the production of antibodies. Well, no one's ever explained it to me like that before. That's interesting.

While I'm still processing what I just heard, we move on to the desk at the next corner. Here I have to show my health insurance card, and the woman asks me if I have my vaccination certificate with me. I nod and confirm that I do. She doesn't want to see it. "Later," she says.

Following the markings, we continue along the corridors. Even from a distance, we can see the backs of the rows of vaccination booths. In front of them are many chairs, a few of which are occupied. We take our places at the back of the line. It reminds me of a game of musical chairs. I always enjoyed that game. A young man watches the scene and grins kindly. I think he's thinking the same thing as me.

We move forward, chair by chair. It's really quick. At the end of the row, we can already see what happens after we move up. Chains with LEDs are stretched around the entrances to the cubicles, flashing cheerfully in red and green, signaling us entry after just a few seconds. The third cubicle from the left is ours. My husband and I look at each other and around. It's quite spacious. A young, tattoo-savvy assistant asks me for my vaccination certificate. He offers us a seat, and we wait with bated breath to see what happens next.

I perk up. The sound of brisk footsteps approaches the booth. And suddenly, there he is, my personal savior in camouflage and combat boots. "Good afternoon," Sander. "You'd like to get vaccinated." Immediately, a thousand questions pile up in my head, forming towering clouds. They all scream, "Ask me!" I don't know what to ask first, so I tell him I have the metabolic disorder Alpha-1 Antitrypsin Deficiency and I'm not sure if AstraZeneca is the right vaccine for me. He frowns slightly. A sign that he doesn't know what to make of my condition. But patiently, stuttering slightly as he tries to pronounce Alpha-1 Antitrypsin Deficiency, he explains that the stuff is good. But the Russian one is even better, because it uses two species of monkeys. Oh yeah, I'd just heard about the monkey species. And what was the name of that stuff again? Sputnik or something?

„"Did you tolerate other vaccinations well?" he asks me briskly. I nod, taking his nod as encouragement. Somewhat relieved, I think, no time for chit-chat, let's get down to business. That means rolling up my sleeves and getting on with it. "Count to three." I have to chuckle. How does that sound? I certainly hope everyone here can count to three. So I start counting in my head and look expectantly at Dr. Sander. "Just the plaster now," he says, already scribbling his signature in the vaccination booklet. Um, what? "I didn't feel a thing," I say, surprised. He grins and replies, "Well, I've been doing it since December 27th." Okay then, I think, and thank him politely.

We leave the cabin and find ourselves in a sort of waiting room. An older woman informs us that we have to wait here for 15 minutes. She also asks if we'd like something to drink. We gratefully accept. She notes the time, and we sit down. We watch curiously what's going on around us. Nothing out of the ordinary, really, as most people are talking quietly or dozing. But then, suddenly, an older woman rushes up to check out with her daughter in tow and explains to the somewhat startled-looking helper in broad Swabian dialect: "I han keia zeid mehr. I muss hoim kocha. Mai Mo hedd hungr." We have to laugh. These pensioners just never have any time.

After I handed in my form, we strolled to the parking lot and drove home at a leisurely pace. All the excitement had vanished, replaced by a feeling of inner peace. After our lunch together, I spent the rest of the day working from home and felt fantastic. I have to admit, I removed the bandage that evening to check if there was actually blood. There was. Phew. .

My personal experience with the Corona vaccination will always remain a fond memory.

Finally, I would like to thank everyone who made this step back towards a more carefree life possible for me. Thank you, and I hope you all stay healthy.

Gaby Tronnier, March 8, 2021

Rare Disease Day, updates on the Corona vaccination, meaningful lockdown activities & much more

Alpha1 Germany eV.

On February 28th, the Rare Disease Day, also called Rare Disease Day, this time under the motto „Let there be light„"During this international campaign, buildings of special significance were illuminated in the colors of Rare Disease Day. Several of us also participated in activities for this day; for example, Gudrun Plett called for more plasma donations. And some members of the self-help group in Saxony/Saxony-Anhalt..." Candles in the window posed, while group leader Udo Held explained Alpha1 at an online event in Dessau.