{"id":4459,"date":"2021-03-08T14:51:03","date_gmt":"2021-03-08T13:51:03","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?p=4459"},"modified":"2022-02-28T16:34:33","modified_gmt":"2022-02-28T15:34:33","slug":"02-2021-tag-der-seltenen-erkrankungen","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/02-2021-tag-der-seltenen-erkrankungen","title":{"rendered":"02\/2021: Rare Disease Day, updates on the Corona vaccination, meaningful lockdown activities & much more"},"content":{"rendered":"
<\/div><\/div><\/div>
\n\t
\n\t\t
\n\t\t\t
\n\t\t\t\t\n
\n\t

Rare Disease Day, updates on the Corona vaccination, meaningful lockdown activities & much more<\/span><\/h1>\n<\/div>\n\n\n\n
<\/div><\/div>
<\/span><\/span>

Author<\/h4><\/span><\/span>\n<\/div>\n
\n\t

Alpha1 Germany eV.<\/b><\/p>\n<\/div>\n\n\n\n

<\/div><\/div>\n
\n\t

On February 28th, the Rare Disease Day, <\/strong>also called Rare Disease Day, this time under the motto \u201eLet there be light<\/a>\u201e"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<\/a> posed, while group leader Udo Held explained Alpha1 at an online event in Dessau.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t

<\/div><\/div><\/div>
\n\t
\n\t\t
\n\t\t\t
\n\t\t\t\t\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t
\n\t\t
\n\t\t\t
\n\t\t\t\t
\n
\n
\n
\n \"\"\n <\/div>\n <\/div>\n \n <\/div>\n <\/div>
<\/div><\/div>\n
\n\t

Gudrun Plett with her appeal for plasma donations.<\/em><\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t

\n\t\t
\n\t\t\t
\n\t\t\t\t\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t
<\/div><\/div><\/div>
\n\t
\n\t\t
\n\t\t\t
\n\t\t\t\t
<\/div><\/div>\n
\n\t

More information on the Corona vaccination<\/span><\/h2>\n

Coronavirus is and remains a topic of discussion; uncertainty is palpable, and we have received many inquiries. Therefore, we would like to address the topic of vaccination again:<\/p>\n

Prioritizing the Alphas<\/span><\/h3>\n

To do this, we Alphas need to be divided into four groups:<\/p>\n

    \n
  1. Patients with emphysema (or COPD) are currently classified as being in Group 2 according to the Robert Koch Institute (RKI). A confirmation letter from their treating physician is sufficient (as reported in the last newsletter). Although there is no data on an increased susceptibility to COVID-19 in patients with emphysema, caution is still advised to avoid further stressing their already vulnerable lungs.<\/li>\n
  2. Alphas with severe liver or kidney damage are also found in Group 2. The Liver Aid organization offers comprehensive Corona recommendations for people with liver disease.\u00a0<\/a><\/li>\n
  3. Alphas with significant comorbidities (accompanying diseases), since we Alphas belong to the group of rare diseases, can obtain an individual case decision through the doctor and thus be prioritized.<\/li>\n
  4. What remains are the "alphas," those who have no symptoms and are otherwise healthy. Of course, they should also protect themselves from lung damage throughout their lives (hence the recommendations for pneumococcal and influenza vaccinations, quitting smoking, reduced alcohol consumption, and careful planning when choosing a career), but according to current data, they are not at risk of experiencing a severe course of Covid-19. The recommendation to get vaccinated when called upon also applies, but no prioritization is planned.<\/li>\n<\/ol>\n

    Naturally, we also discussed this with the Alpha1 specialists (lungs and liver), who also believe that prioritization should depend on the symptoms and not on the deficiency itself.<\/p>\n

    Reaction to the vaccinations<\/span><\/h3>\n

    Based on current knowledge and limited experience, we Alphas do not react to vaccinations any differently than others. Many experience minor reactions (redness at the injection site, mild fever, and fatigue with muscle aches). It should be noted that with mRNA vaccines (such as BioNTech\/Pfizer or Moderna), the body often only reacts after the second dose, while with adenovirus-based vaccines (such as AstraZeneca), the body more frequently reacts after the first dose.<\/p>\n

    The good thing is: if you react, you can see for yourself that your body is dealing with the virus and starting to build up protection.<\/p>\n

    Which vaccine should we get, Alphas?<\/span><\/h3>\n

    All vaccines approved to date are suitable for us according to current knowledge; this applies in cases of severe shortage as well as to people with PiMZ (the only exception being transplant recipients).<\/p>\n

    Special features for transplanted Alphas<\/span><\/h3>\n

    Please discuss the vaccination with the transplant center and your treating physician. Uwe Deter offers a tip: the online seminar on "Vaccination after Organ Transplantation" from the Survival Foundation has been recorded. Here is the link to the event from February 2nd, 2021.<\/a>, where all important questions about vaccination and transplantation are answered.<\/p>\n

    In fact, we like to use the saying: The main thing is to be vaccinated! Because according to current knowledge, all vaccines provide significant protection against severe cases!<\/p>\n

    Prof. Tobias Welte (MHH) has clearly and explicitly stated many of these points. in a video<\/strong> brought up<\/a>.<\/p>\n

    Are we more susceptible to Covid-19 infection?<\/span><\/h3>\n

    An article from America has caused considerable concern, but this cannot be confirmed by data from Germany. As yet unpublished data from a study by Dr. Pavel Strnad show no increased risk, at least for carriers (PiMZ, PiMS), and also that the initially suspected risk does not exist for the PiZZ and PiSZ variants.<\/p>\n

    Nevertheless: Take care of yourself, continue to be cautious and live according to the AHA rules; as already mentioned, you should not subject an already damaged lung to any further strain.<\/p>\n

    How does the registration process for a COVID-19 vaccination work?<\/span><\/h3>\n

    A report from an Alpha1 member: 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 group leader, Heike Isensee, has written. In the preview pane, I read the subject: Vaccination. Find out here what happens next.<\/a><\/p>\n

     <\/p>\n

    Further useful information<\/span><\/h3>\n