Marion Wilkens, as appeared in Alpha1 Journal 2/2024.

The AlphaCare Patient Support Program (PSP) is celebrating a very special anniversary this year: For ten years, it has been supporting people with alpha-1 antitrypsin deficiency and their families in their daily lives. What began as a joint initiative of Grifols and the patient organization Alpha1 Deutschland eV has developed into an indispensable service for many affected individuals. In addition, PSPs promote better treatment adherence and, alongside doctors and patient organizations, form a third pillar for coping with everyday life with a chronic illness.

The idea for AlphaCare originally came from the company Grifols, and at first, it made us wonder if we could be replaced by it. But that wasn't the case, because many patients wanted more support and regular contact, something we couldn't provide on a volunteer basis. Together with Grifols, we invested a lot of time to help develop a program that truly offers added value and complements our existing services. There was always enough work to share, so it was easy to distribute the responsibilities among several people.

Initially, the first workshops were created, which not only imparted knowledge but also offered practical support – for example, in the form of cooking classes. These events helped to define the central themes of AlphaCare: exchange, support, and a sense of community.

It quickly became clear that AlphaCare was very well received by many of those affected. The regular phone calls and AlphaCare regional meetings showed us how valuable this program is as a supplement. A particularly impressive moment was a group sing-along at a regional meeting in Stuttgart: "It was fascinating to see how singing transformed a mixed group into a true 'we'."„

The coaches play a particularly important role, as their dedication and empathy contribute to AlphaCare's continued success. We support the idea of including family members in the program in the future, as they play a significant role and often have their own questions that aren't directly addressed to the individuals being cared for.

Despite the successes, challenges remain. Organizing substitution therapy while on vacation (especially abroad) remains particularly difficult. We try to refer patients in such cases to patient organizations in the respective country, but this doesn't always work smoothly. Even in Germany, it can sometimes be complicated to find a practice that will provide substitution therapy as an alternative. AlphaCare supports program participants in their search for such a practice. It is also important to better integrate rehabilitation facilities and make substitution therapy more readily available there.

In any case, personal interaction will continue to play a central role, as newly diagnosed patients in particular are incredibly grateful for personal conversations.

Congratulations to AlphaCare on ten years of commitment, inspiration and collaboration! We look forward to many more years full of joint projects and valuable encounters.

AlphaCare nutrition seminar on October 9, 2020:
Everything is new in May

Bernd Dobbert and Barbara Pixa, SHG Cologne

„"Actually" – a word often used these days – yes, actually, Barbara and I, along with our Cologne group, should have been co-organizing a seminar, this time with AlphaCare from the company Grifols, represented by Mr. Böhlefeld. We had originally chosen the topic of vacation, and the initially scheduled date in May would have been the ideal time for the seminar.

But a well-known virus had other ideas, and we had to rethink everything. We switched from the topic of vacation to nutrition, because when you're spending more time at home, you might eat a little more than usual. Then the idea of an online seminar came up, and suddenly we were able to invite members from other groups as well.
AlphaCare was venturing into uncharted territory, and many things had to be arranged internally beforehand. Finally, the date was set for October 9, 2020.
Some technical details had to be exchanged beforehand, and finally all participants throughout Germany were able to join the presentation via the provided link.

New format in practice

After a brief welcome from the Cologne group, Mr. Böhlefeld explained how to ask questions via the chat function. He then handed the floor to nutrition expert Ms. Amely Brückner from Hamburg.
She is a certified nutritionist and regularly gives nutrition seminars for various target groups. Among other things, she works in hospitals to support cancer patients with their nutritional needs during various therapies.
Ms. Brückner began her presentation with some information about the food pyramid, using clear and informative slides. Questions quickly arose, which Ms. Brückner was able to answer comprehensively and directly. It became clear that she has a deep understanding of nutrition and is familiar with the latest research in the field.
Even though some may have thought beforehand, "Another boring nutrition seminar," they were proven wrong. The presentation was engaging; Ms. Brückner captivated us all with her information.
After presenting the building blocks of a healthy diet, the discussion moved on to the topic of body weight and energy requirements. The additional problems faced by overweight individuals with Alpha-1 diabetes were also explained, as the diaphragm, the primary respiratory organ, is subjected to excessive pressure in cases of excess weight, further impairing breathing.

Camembert and other small items

Ms. Brückner talked about protein, selenium, iron and phosphorus, polyphenols, zinc and sulfides, which left some people confused. But she quickly solved this puzzle of familiar and unfamiliar details. Once a week, please, meat; twice a week, fish; and the rest of the time, vegetables, vegetables, and more vegetables.
Don't eat fruit too often because of the fructose (= sugar), drink 30 to 40 milliliters per kilogram of body weight, and if the hunger for chips or chocolate drives you crazy, then please resort to popcorn (preferably lightly salted) or dark chocolate.
Their motto became increasingly clear: everything in moderation and don't overdo it. Whole-wheat pasta makes enjoying pasta less of a chore; paprika goulash instead of goulash with spaetzle; and Camembert with bread instead of baked Camembert.
Eat fatty fish like wild salmon, thick organic yogurt, and choose 3.8% milk over 1.8% milk because the higher-fat milk contains healthier fats. Taking your time while eating, regular exercise, and eating pork in moderation are just a few aspects of her philosophy.

Interactive communication

Mr. Böhlefeld collected the written questions during the presentation and chose the right moments for the Q&A session. Why only wild salmon and not farmed salmon? The answer came in a flash. Farmed salmon is kept in too confined a space in the sea farms and grows too quickly. Wild salmon is healthier and provides a much more concentrated source of Omega-3.
There were also a few direct comments. The topic of veganism sparked some controversial discussions. One member spoke very strongly in favor of a vegan diet, citing his positive experiences. He even claimed his FEV1 value had improved. Ms. Brückner vehemently disagreed, arguing that vegan diets would only lead to short-term improvements and that, in the long run, they were actually harmful. The two did not reach an agreement and remained firm in their convictions.

ConclusionIt was a successful event in every respect, and all participants agreed that it was a very interesting format. Ms. Brückner had previously held her seminars in smaller groups. She had never before spoken to nearly 40 participants. Our Cologne group would like to extend our sincere thanks to Mr. Böhlefeld for the excellent organization and to Grifols for their AlphaCare program. I hope that Ms. Brückner will soon treat us to another such wonderful evening on nutrition, in whatever form that may take.

With that in mind: eat well and stay healthy!

AlphaCare Regional Days together with SHG Stuttgart

Heike Isensee, Group Leader SHG Stuttgart

AlphaCare Regional Day of Grifols with the SHG Franken on May 11, 2019 in Bamberg

Reiner K. Kersten (Deputy SHG Franken)

Since the founding meeting of the SHG Franken (Self-Help Group Franconia) in February 2017, group leader Sandra Böhmer has organized numerous excellent meetings. She has now succeeded in arranging a meeting with AlphaCare.
The written invitation to the AlphaCare Regional Day in Bamberg, themed "Alpha-1 and Nutrition," took place on Saturday, May 11, 2019, at the Welcome Congress Hotel Bamberg. Following a brief welcome to those affected by Alpha-1 and their families by Mr. Reiner Kersten, deputy representative of the Franconian Self-Help Group (SHG Franken), Ms. Wiebke Sowen, project manager from Medical Consulting Group, took over the program. Ms. Sowen introduced her colleague, Mr. Burkhard Leise (project assistant), and the speaker, Ms. Amely Brückner (nutritionist).

Ms. Brückner works freelance, among other things as a fitness trainer, instructor and workshop leader for workplace health promotion, nutritional advice and therapy, as well as much more at the Competence Center for Dermatology in Buxtehude / Schleswig-Holstein.

Ms. Brückner's program began with ten tips for a healthy diet at Alpha-1 and focused on the following areas:

„"Nutrition is key", "The building blocks for a healthy diet", "Body weight and energy requirements", "Individual calculation of Body Mass Index (BMI)", "Ideal weight and energy requirements", "Calculation of basal metabolic rate", "Calculation of total energy requirements", "The morning sets the day – A healthy breakfast", "Avoiding the midday slump – A light lunch", "The best is saved for last – A dinner to enjoy".
Specific questions were asked on all these topics, which Ms. Brückner answered competently, comprehensively, professionally, objectively, and clearly. Among those affected by Alpha-1, there was also some lively discussion and an exchange of experiences. Interest in all these topics was very high, and the atmosphere among all those present was relaxed, so much so that no one even noticed that the scheduled time (2:00 p.m.) was exceeded by almost two hours. Preparing delicious, colorful vegan wraps and enjoying a midday snack rounded off the day.

Mr. Kersten reiterated the urgent need to submit the data protection declaration.
A heartfelt thank you to Mrs. Brückner and the AlphaCare team for the truly successful and informative event.

Reiner K. Kersten (Deputy SHG Franken), as published in Alpha1 Journal 1-2019.

AlphaCare Regional Day of Grifols in Hamburg – Topic: Emergency management in cases of respiratory distress

Marion Deter, as published in Alpha1 Journal 1-2019

AlphaCare hosted a regional event with Dr. Deimling from Schleswig as the speaker. His topic was emergency management for respiratory distress, which he presented very well and clearly. With 33 participants, the event was well-attended and featured lively interaction with the speaker.

Many people experience shortness of breath and then panic. That's why it's important to stay calm and breathe slowly. Everyone who hears this immediately thinks it's impossible. But Dr. Deimling explained to us that the air needs to be released (overinflation). Therefore, everyone should practice slow breathing calmly (as part of their normal daily routine), for example, using pursed-lip breathing. Only those who can mentally understand it will be better able to implement it in an emergency. The mind plays a significant role in this.

Shortness of breath can have many causes, such as infection, cold air, and changes in air pressure.
In the case of an infection, there are several signs that indicate a worsening of the illness: frequent use of the emergency inhaler, increase in cough and mucus, possibly greenish sputum, decrease in peak flow value, and exhaustion.

Anyone experiencing these signs should take action to prevent the situation from worsening. However, these signs often appear when the family doctor is unavailable. Therefore, it is all the more important to develop an emergency action plan with your doctor. This plan may include:

• Which spray can be used how often per day at most,
• how it can be inhaled (amount, frequency),
• Cortisone (amount, frequency), it is important to know that cortisone can raise blood sugar and lead to sleep problems.

Of course, the action plan is no guarantee that the overall situation will improve. A high fever (over 38.5°C), lethargy, fatigue, and the symptoms mentioned above may develop, and they may worsen. If this happens, action must be taken. In an emergency, call emergency services and, if necessary, be admitted to the hospital.
Everyone can prepare for this exceptional situation in case the caller panics and doesn't know where to call emergency services. It helps to keep a piece of paper with your name and address next to the phone; then you only need to read it, preventing further panic.

It would also be advisable to prepare an "emergency information sheet/folder," which simplifies the work for the emergency services or hospital because the sheet can be taken along. It should contain the following current information.

• Name and health insurance company
• disease
• Medication plan
• Allergies
• Telephone number of relatives
• Possibly copies of the latest doctor's or hospital reports.
• possibly care level and care service

Everyone can carry this basic information in their wallet in case something happens while traveling.

These are all situations that nobody wants to imagine, but should they occur, it is important to be prepared so that no additional panic arises because of the data.

Dr. Deimling emphasized that every manager is aware of their illness and can therefore to some extent control how emergency management in the event of respiratory distress would look.
Marion Deter, as published in Alpha1 Journal 1-2019.

AlphaCare Regional Day of Grifols in Stuttgart

Heike Isensee, as published in Alpha1 Journal 2/2018

On November 10, 2018, an Alpha Care regional day took place at the Maritim Hotel in Stuttgart. The event's motto was "Conscious Breathing – Simply Singing." After a brief welcome by Ms. Mehmetaj from Medical Consulting, Ms. Marion Wilkens, Chairwoman of Alpha1 Germany, addressed the numerous Alpha-1 patients, their families, and other interested individuals in attendance. She spoke about the work, achievements, and goals of Alpha1 Germany, sparking the interest of several attendees who were previously unaware of the organization. Even those already familiar with Alpha1 Germany were brought up to date. The presentation proved enriching for everyone.

Following this, Ms. Eveline Skarek began her program. The trained vocal therapist, teacher, and multimedia art therapist, who also sings professionally, had put together a very informative and entertaining program of information and training. She primarily spoke about the function of the respiratory muscles, especially the diaphragm. Those present were able to experience how simply by adopting correct posture, the diaphragm is given more room to move, resulting in deeper breathing.

Therefore, the participants practiced sitting upright in a stable position – ideally on the edge of the chair, feet firmly on the ground, slightly pulling the navel inwards and keeping the head straight and not overextended.
The participants were instructed to maintain a posture that prevented the trachea from stretching and narrowing. In this breath-flow-optimized position, they then performed gentle yet highly effective exercises to stretch the accessory respiratory muscles. Furthermore, they experienced how concentrated abdominal breathing significantly increased oxygen intake, to the point that some even felt slightly dizzy.

The training aimed not only to prepare for relaxed singing. This posture, combined with correct breathing and proper use of pursed-lip breathing during exhalation, makes it easier for those with Alpha-1 dystrophy to better manage an acute emergency and improve the body's oxygen supply. In this way, everyone can be the best expert for their own health, even in crisis situations.

After everyone had warmed up with these exercises, a short break allowed for singing. Although many attendees initially had reservations about singing, (almost) everyone joined in with fun and enthusiasm. Participants could choose their favorite songs from a comprehensive list, and Ms. Skarek, accompanied by guitar, managed to transform the group into a real choir, which even ended up singing a four-part canon. Many thanks to Ms. Skarek for this memorable workshop.

The event was documented by a film crew to capture an impression of how well the program was received by those present for future events of this kind.

Following the event, the new self-help group of Alpha1 Germany for the Stuttgart region, led by Heike Isensee and Madline Mack, introduced itself. Many new acquaintances were made in the subsequent conversations, and numerous people expressed interest in future meetings. This bodes well for successful and stimulating events.

A heartfelt thank you to all the organizers of this event and also to the numerous enthusiastic and courageous participants who sang!

Heike Isensee

Published in Alpha1 Journal 2/2018.