Author
Marion Wilkens Alpha1 Germany eV, as published in Alpha1 Journal 2/2023.
According to the Federal Ministry of Health, "rehabilitation services" encompass all medical services that serve to prevent, eliminate, reduce or compensate for a disability or need for care, to prevent its worsening, or to mitigate its consequences.
Rehabilitation and preventive care services can be provided on an outpatient or inpatient basis; they can be provided at the place of residence (in the case of mobile rehabilitation, even in the home of the person to be rehabilitated or, for example, in a care facility), in a recognized rehabilitation clinic or in an inpatient preventive care facility.“
If only it were always as easy as it sounds. Locally? Who among you has a rehabilitation facility nearby that specializes in alpha-1 deficiency? Having one close to home would be a dream come true.
We need your experiences, your reports from rehabilitation clinics.
The Federal Ministry's website actually explains very well what rehabilitation means, what types of rehabilitation exist, and even describes topics such as reimbursement and the right to choose. The webinar (see page 37) with Ms. Scherhag and Prof. Koczulla also provided us with a great deal of knowledge and support. However, the real problem that we, as Alpha-1 patients, see, is hardly addressed. Therefore, we have launched a "Rehabilitation" project within the board of Alpha1 Germany.
We need you for this!
We need your experiences, your reports on rehabilitation clinics that we might not even be aware of. The Schön Clinic in Berchtesgaden, with Prof. Koczulla, is clearly a leader in research on alpha-1 antitrypsin deficiency in relation to rehabilitation and training. The results achieved there help us to better manage alpha-1 and implement more targeted training. However, we mustn't forget that everyone experiences rehabilitation differently, and it's essential to determine what works best for each individual. The many experiences of others are invaluable in this process and in deciding which rehabilitation clinic is right for you. We have therefore compiled some of these experiences in this journal. Furthermore, together with the German Respiratory Society/Alpha1 Centers, we have begun surveying rehabilitation clinics about their suitability for alpha-1 patients.
Our primary wish is that
- Alpha-1 antitrypsin deficiency is well known in clinical practice.
- The training is personalized and tailored to our specific condition.
- Consideration is given to mental health, possibly with psychological support.
- Training courses will be offered as needed (inhalation control, breathing-relieving positions, emergency procedures, where to get help, etc.)
- Social welfare advice is available
- Good cooperation during this time is ensured, which also includes areas such as care, food and accommodation.
Unfortunately, there are too few rehabilitation facilities that are familiar with Alpha-1 deficiency.
And last but not least, it's crucial that substitution therapy is organized locally and can be continued without problems. We hear the most outlandish justifications in this area for why a facility doesn't offer this service, even though it's obligated to do so. Unfortunately, there are too few rehabilitation facilities that are familiar with alpha-1 deficiency. This needs to change. There are only one or two outpatient options nationwide (!), and it's high time this issue was addressed.
Please feel free to share your experiences with us. You don't have to write entire texts right away; we can also work with you to formulate them. If you wish, we can use your experiences anonymously in advising others, or you can share your experiences with other patients via our website or journal – we would be delighted if you would support us in making this section valuable for all Alphas.
