You are not alone! 

Caring for someone with alpha-1 antitrypsin deficiency is challenging – physically, emotionally, and logistically. Here is an overview of important support and tips.

Practical care tips

• Coping with shortness of breath: Stay calm, maintain an upright sitting position, use pursed-lip breathing, and use oxygen therapy correctly.
• Structuring daily life: Planning breaks together, regulating activities, using assistive devices (home emergency call system, walking aids, etc.).
• Applying for a care level assessment with the long-term care insurance fund enables financial support and relief services.

Relief options

• Respite and short-term care from care level 2 (up to eight weeks/year if you are unavailable)
• Day care or outpatient care service
• Care courses (free of charge via the long-term care insurance fund)
• Relief allowance (currently €131/month for all care levels in the case of home care)

Self-care – Important for you!

• Take regular breaks.
• Pay attention to your own health (doctor's visits, exercise, sleep).
• Get help: from family, friends, or professionals.
• In case of overload: Seek early advice or psychological support.

Key principle: Only those who have strength themselves can provide good long-term support.

Important contact points

• Alpha1-Deutschland e. V. – Central Contact Point (https://www.alpha1-deutschland.org)
• Local care support center (via health insurance company or municipality)
• Telephone counselling service: 0800 111 0 111 (free, 24/7)
• Palliative care consultation: Include it early for better symptom control and relief.

Emotional support

• Exchanging information with other family members is one of the greatest forms of relief.
• Please participate regularly in our Zoom exchange – here you can speak openly about your feelings, worries and experiences.
• Further offers: Regional self-help groups of Alpha1-Deutschland e. V.

To offer you the aforementioned emotional support, we have decided to launch an exchange via Zoom exclusively for family members on the first Tuesday of every quarter.

Welcome to the regular Zoom exchange for family members!

 What can you expect? 

• An open, appreciative circle of people who are in a similar situation.
• Exchange of experiences, tips and coping strategies
• Space for your feelings – joy, sadness, anger, exhaustion or hope
• Recharging together and the feeling: You are not alone with your challenges.

We will provide practical information on care, support options and relief on the homepage and in the journals.

Why this exchange is particularly valuable: 

Many relatives say: „"Finally, someone who truly understands how I feel."“ Here you can speak openly – without explanations, without justifications.

Note: Everyone is free to remain silent – no one has to say anything.

Appointments 

The exchange in this safe space will initially take place once a quarter via Zoom and will be moderated by Monika Tempel, a physician specializing in psychopneumology. She will be assisted by family member Roland Wilkens.

The meetings last approximately 90 minutes.

First appointment: October 6, 2026 at 7:00 PM.

You can find further dates at https://alpha1-deutschland.org/hilfe-fuer-angehoerige

Your active participation is most welcome! 

Feel free to bring your own topics and concerns. Whether you have specific questions about dealing with anxiety, communicating with the sick person, or simply need to vent – everything is welcome. The more you contribute, the more lively and helpful the exchange will be for everyone.

Here's how you can participate: 

Simply send us a short message to angehoerige@alpha1-deutschland.org with the subject line "Registration for family exchange".

You will then receive the Zoom link and all further information in good time before the next appointment.

We are really looking forward to meeting you and hearing your story.

As family members, you do incredible things every day – this circle is meant to do you good.

With kind regards

Monika Tempel and Roland Wilkens

angehoerige@alpha1-deutschland.org

https://alpha1-deutschland.org/hilfe-fuer-angehoerige]

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