Stories from life

A video podcast will explain why

Melanie Jost has a vision: she would like to produce a video podcast on rare diseases and life with a tracheostoma to discuss the two topics. From her own experience she knows that most people have no knowledge of these topics. Even in professional circles awareness of these topics is limited. For Melanie these topics are extremely important, for she lives in a world in which contact with people and/or plant materials could have fatal consequences for her.

Ms Jost has been experiencing serious allergic reactions, still undiagnosed, for three years. As a result she has required a tracheostomy. She knows something about her health: she has asthma, a chronic inflammatory disease of the respiratory system. She also has an allergic reaction to anything containing menthol, and that is found in a lot!

It is a substance that can be found in food, in the natural environment, in cosmetics and cleaning products. Unfortunately, the odour alone is enough to trigger an allergic reaction. Her body also regularly develops swelling in the face and mouth area, referred to as angioedema. The cause of this is still unclear. The allergic reactions are so strong and there are so many different triggering substances that Ms Jost is always encountering life-threatening situations; she suffers anaphylactic shocks and has had such serious swelling that she has had to be placed in an induced coma for several days. Many of her symptoms still cannot be explained by current medical knowledge. She has been using a tracheostomy tube since her tracheotomy in 2023. Fortunately, she is able to speak quite well with a speaking valve, although she generally can only use it for half an hour before she becomes too fatigued.

Her idea: a podcast

Melanie has experienced a lot in recent years – both good and bad. She has become aware that too little is known about her diseases. At the same time, she sees that a tracheostoma patient who is able to talk is an outstanding opportunity to educate nurses and doctors (in training). However, it must be in a format that allows the presenter to make knowledge interesting and also understandable for non-professionals. Could an interview format be the solution? This led to the idea of the podcast. In addition to targeting medical professionals, Melanie also wanted to communicate with people in similar situations and their family members. "The embarrassment of no longer being able to do what we have been brought up to from childhood, such as speaking clearly, eating without making a mess, except for hamburgers (laughs), silences many people. Questions are not asked, situations that could be improved (often significantly) are simply accepted as they are. This is not necessary!“ says Ms Jost.

Wide range of topics

People with tracheotomies could also benefit from the podcast. Melanie Jost explicitly discusses life with the tracheostoma and the consequences in some episodes. She also includes explanations of the anatomy, or addresses questions about the various types of tracheostomy tubes. "Questions about quality of life or how to deal with curious people, revulsion, rejection – we discuss many aspects", she says, describing the planned content. In her opinion the form of the video podcast is well suited for explaining various topics such as clarifying medical terms and also for keeping it on a less serious level. The interview format with experts and patients encourages interesting discussions and it painlessly communicates knowledge.

What she finds most important is to treat patients with respect. She herself has had to experience again and again not being taken seriously because of the lack of diagnosis and suggestion of psychological problems. She finds that frustrating. On the other hand, she has also experienced very respectful treatment from doctors, therapists and her international care team. She is very grateful to them all. And not least to her personal circle. Friends, family and most of all her wife Dagmar who have all supported her throughout.

Now back to the planned podcast. The content is decided and people are ready for interviewing. Melanie now needs someone for technical support. Such a person must be flexible and available at short notice, because Melanie herself has to be flexible depending on her state of health. She is hoping for an option for this, but at the moment she is not feeling fit enough to do it herself. She wants to tell other patients: "don't let yourself be fobbed off with platitudes, or suggestions that you have psychological problems or are simply a hypochondriac. Defend yourself if necessary. Inform yourself! And ask for help. No one in this country needs to be alone because of this. There is always someone who knows someone!"

In conclusion, we ask Ms Jost what helps her at difficult times. She told us about her loving environment, which supports her and helps with exercises promoting positive thinking and about her hobbies such as handicrafts, photography or word games. And not least there are her dog and three cats with their unconditional devotion and her enjoyment of their company.

Melanie Jost, 52 years old

Sources:
picture on top: EFA_KIgenerated – stock.adobe.com
Portraits: Melanie Jost, privat