Alpha-1 Panniculitis: Bringing People Together

Author

Marion Wilkens, Alpha-1 Germany eV & Dr. Frank Willersinn, Alpha-1 PLUS asbl

There are various reasons for developing a skin infection like panniculite, and alpha-1 antitrypsin deficiency is one of them. The clinical signs can vary considerably from person to person, but generally, the infection clears up with treatment using alpha-1 antitrypsin, which is always an off-label use. Unfortunately, as you know, alpha-1 antitrypsin is not currently available as a medication in all countries.

Alphas suffering from a chronic illness with emphysema or liver problems learn to cope in various situations of daily life, adapting primarily through training, information, and communication with other Alphas.

For Alphas with panniculitis, the situation is somewhat different: pain and infections often dominate their daily lives, and they also do not know other Alphas with the same condition to exchange experiences with.

The skin, as the largest organ of the human body, has different functions depending on its location. It separates our body from the outside world, protecting it from environmental influences such as heat, cold, moisture, wind, dust, dirt, dehydration, UV radiation, pollutants, germs, and much more. Since panniculitis infections are often not localized to the entire body, specific advice and personalized treatments need to be explored – they are essential for well-being.

There are only a few Alphas with panniculitis in Europe, and so far there is no structure to bring them together, tell their stories and share their experiences.

As we know, social integration and psychological well-being are the most important factors for quality of life in rare diseases. Alpha1 Germany and Alpha-1 PLUS, together with other Alpha-1 communities, aim to bring Alpha-1 panniculitis patients together and create opportunities for them to communicate within a group.

Less for academic or research purposes, but to escape loneliness, exchange experiences, find new connections, and feel like part of a group somewhere.

But we have to find them!

And therefore we would like to ask for your support:

If you know people with panniculitis, please forward our letter to them.

And if you ask them to contact us, their privacy will be respected.

Thank you so much for your help!

You can download the appeal here:

German: