Living with a rare disease (RD) can affect individuals as well as their families and friends in multiple ways. There are many challenges that vary depending on the condition – from unexplainable symptoms in spite of many doctor visits, struggles with insurers to get access to expensive diagnostic tests, a lack not only of established treatment options but also social support more generally.
RD are often characterized by an early onset that leads to chronic conditions that impact not only quality of life but also lead to a significant decrease in life expectancy. Given that patient experiences are still under-investigated and characterized by specific individual circumstances our DIPEx Module will help to capture the complexity and breadth of the challenges RD patients and their relatives are confronted with while identifying sources of support and empowerment.

In our project we listen closely to the stories patients with three different sets of rare diseases – metabolic, neurological and connective tissues disorders – tell us about their everyday lives, the care they receive and how they think it can be improved.
To broaden the insights of our interview study, we intend to work with patient organizations, patient representatives, and clinicians to define key issues around diagnostic and treatment delays, lack of available interventions, access to health and social care services as well as perceived psychosocial and economic effects.

Living with a rare disease. Patients’ and families’ experiences

Everyone sometimes feels pain. Chronic pain, however, is different. It does not vanish for weeks, months, or even years but, unlike acute pain, has lost its warning function.

In this section you can find out how people live with chronic pain. In short videos, they tell their personal stories. For example, they talk about their treatments, how they cope with their pain in everyday life, where they find help or how their lives have changed since they had been diagnosed.

If you have a story you would like to share, please do get in touch with us.

Chronic pain

With the technical and medical possibilities on intensive care a patient can be able to survive life-threatening illnesses. These experiences of critical illness and intensive care medicine are challenging for patients and families. Often experiences made on intensive care unit (ICU) can be life changing.
In small video- or audio-sequences we would like to illustrate the experiences made by patients on ICU and how they handled their stay in this critical situation.
Many patients share their experiences on intensive care unit and show how these experiences influenced their life.

Experiences in Intensive Care

Parkinson's disease is a progressive neurodegenerative disease affecting both the central and peripheral nervous system. Symptoms are very heterogenous and include motor (e.g., tremor, slow movements, muscle rigidity) and non-motor symptoms (e.g., depression, sleep disturbances, anosmia). Communication impairment is also common and is associated with both motor and cognitive disturbances. Many people who suffer from Parkinson's disease increasingly lose their ability to work and their mobility is more and more restricted. Parkinson's disease is a challenge not only for the patients, but also for family caregivers, who must balance their own needs with caregiving responsibilities. Two important treatment options for Parkinson's disease in the advanced stage are deep brain stimulation and the Duodopa® pump. Deep brain stimulation is a brain modulation technique that works like a heart pacemaker and requires neurosurgical intervention. The Duodopa® pump consists of a continuous infusion of levodopa-carbidopa gel via a pump across the intestinal wall into the intestine.
For the Parkinson's module, we conducted 32 interviews with people with Parkinson's disease and family caregivers. Interview excerpts in the form of texts, video or audio clips, as well as drawings, make it possible to experience how the disease and its therapy affect the daily lives of those affected and their relatives.
https://tube.switch.ch/videos/5u841edqMF

Parkinson's disease: deep brain stimulation and duodopa pump

In this module, patients talk about their experiences in dealing with multiple sclerosis (MS). MS is a chronic inflammatory and most common disease of the nervous system. The effects of its multilayered symptoms and different forms of the disease can reach into all areas of people’s lives. They can vary from a mild form, so that an impairment is hardly noticeable in everyday life, to more severe forms, in which physical and mental health is considerably affected. The first symptoms can appear already in adolescence, at the age of 20 to 40 years or after the age of 45.

In short films, text or audio contributions, those affected tell their personal story about how they deal with MS. For example, they report on the treatments they receive, how they cope with the everyday life effects of MS, where they find help and information or how their lives have changed since they were diagnosed.

The contributions in this module aims to help people understand what it means to live with MS, the disease with a thousand faces, according to the motto: “Nothing about us without us”.

This module was financially supported by the Swiss Multiple Sclerosis Society.
https://tube.switch.ch/videos/AtIq1lfTV7

Multiple Sclerosis

Pregnancy – it can be joyous, exciting, nerve-wrecking, heart-breaking, and everything in between. Our pregnancy module would like to capture the varied experiences of parents across Switzerland, providing a resource for other parents who may be going through similar experiences, and for medical professionals to understand what their patients face outside the medical office.
If you have a story you would like to share, please do get in touch with us. Our research team is currently looking for mothers who have recently given birth and who have done non-invasive prenatal testing (you may know this as the Praena test, Harmony test, or Panorama test). We are also looking to understand the experience of mothers who have children with chronic illnesses and genetic syndromes, as well as that of mothers who have made the decision to terminate their pregnancies because of genetic conditions diagnosed in their child.
Please know that you can choose to be as private about your story (using it anonymously for research) or as public about your story (i.e. sharing it on our website) as is comfortable for you.
We are grateful to the selfless contributions of all our participants.

Pregnancy and Prenatal Testing

Talking about hemato-oncological diseases is always complicated.

From a scientific point of view, these are neoplasms that affect bone marrow, the tissue that produces blood cells.

From a human point of view, it is almost always news that disarrays your life, radically changing it and forcing you to reorganize everything. That’s why it’s so complicated to talk about things like leukemia, lymphoma, myeloma, myelodysplasia, especially for young people.

Nevertheless, talking about these diseases is useful: for those who tell their own story, as a tool to put thoughts in order; for those who listen to it, as a way to deal with the lives of others to decide how to direct their own.

This is the objective of this module: to collect, understand and share the experiences of young people (15-34 years old) who are facing – or have faced – a hemato-oncological disease; to “distill” the knowledge of this community and make it available to the community itself.

Download the information sheet

If you are interested in our project and want to contribute by sharing your experiences, you could start by participating in this quick survey https://ufspezurich.eu.qualtrics.com/jfe/form/SV_b1qdCMgriRGSSDH.

Young hemato-oncological patients

Mental health affects us all and it is very common to experience mental health issues at some point in our lives: In Switzerland, around 5% of the population considers themselves under severe psychological stress and roughly 30% suffers from depression at least once in their lifetime. But although mental health issues are so common, there is still a lot of stigma and taboo around them and talking about experiences of mental illness can be rather difficult.

On this website, you can watch, listen and read from people who talk about their personal experiences with mental health and illness. Most have experienced mental health issues themselves, but some are involved in different ways e.g. as family or friends. They share their experiences with symptoms, with the care system, they talk about their everyday life with the illness, about what they have found to be helpful and about their experiences with talking about their mental health. To be true to the vast range of experiences, the experiences that are shared here stem from people of different age groups, gender, and background. Most of them have either suffered from depression or from psychosis.

We hope that this website can serve many people as a resource for experience-based information and that it encourages open and empathetic conversations on mental health.

If you want to share your experiences here, you are very welcome to contact us! We are also looking forward to hearing your feedback and ideas on this website.

Mental health

It was clearr from the beginning that the COVID-19 pandemic would not be solely a medical issue, and that its impact would affect many other aspects of people’s lives: the way we work, our social relationships, our concept of safety and solidarity.

How have our lives changed? How have our societies responded to this unprecedented event? Have these responses been appropriate and effective? Is there room for improvement?

DIPEx was born from a simple yet complex idea: distilling the knowledge of communities to put it to service – for the same communities. That’s why at the beginning of the pandemic we immediately started a dedicated line of research. The module on COVID-19 results from the effort of an international research group with 8 participating countries and over 30 researchers.

In light of DIPEx’s commitment, this research project aims to clarify what we can understand from the experiences of COVID-19 survivors from the countries participating in this study.

This research project focuses on action-oriented research, understood as a participatory process that combines practical knowledge and theoretical reflection, in the pursuit of solutions to issues of pressing concern to individuals and communities.

This research project aims to provide information and support to patients, families, caregivers, friends, and caregivers about the COVID-19 experience, and consequently to understand how response strategies (understood at both the clinical and societal levels) to the current public health crisis and future significant public health threats can be reshaped and improved.

https://tube.switch.ch/videos/9q9U3W3hsG

COVID-19

Dementia is the generic term for more than 50 different forms of dementia that affect the brain function (ICD-10, www.dimdi.de). The initial signs include particularly forgetfulness. Our younger and older narrators talk about the various limitations caused by dementia and how the disease leads to an extensive reorientation in life.

In addition to people with dementia, in this module caregivers who provide or have provided help over a long period of time talk about their experiences as well. Caregivers are the most important support. Dementia care is time-intensive and often affects not only one person but the family as whole. The caregivers take on functional activities every day, but also social tasks. They keep their partners in the community, advocate for them in medical and nursing treatment and in the social environment. As well, they are concerned about a suitable place for them to live.

Dementia care starts very early and develops towards “permanently physically being there”. Where the person with dementia should live, if or when she or he will transfer to a nursing home, is a concern for both the person with dementia and their relatives.

The narratives make the invisible sides of dementia visible. How is dementia experienced? How can there be seen opportunities to shape life despite the lack of cure? What does dementia care mean? What is difficult about it? Concrete concerns of the patients and caregivers in various fields of society are highlighted.

You can watch the excerpts from the interviews as videos, listen to them or read them as text.

This module is made possible by funding from Alzheimer Switzerland.