Introduction
Materials and methods
Study subject
Data collection
Analysis
Results
Patient | Geographic area | Age Group | Sex | Organ involvement |
---|---|---|---|---|
P1 | North | 20–29 | Female | Lung |
P2 | North | 40–59 | Female | Lung, Lymph nodes, Skin |
P3 | South | 40–59 | Female | Neurosarcoidosis |
P4 | South | 40–59 | Female | Skin |
P5 | South | 60–80 | Male | Skin |
P6 | South | 60–80 | Male | Skin |
P7 | South | 30–39 | Female | Lung, Skin |
P8 | South | 60–80 | Female | Peripheral nervous system, Lung, Lymph nodes, Eye |
P9 | South | 40–59 | Female | Eye |
P10 | West | 40–59 | Female | Neck to mediastinum, Lymph nodes, Heart |
P11 | North | 60–80 | Male | Lung |
P12 | South | 40–59 | Female | Lung, Lymph nodes, Bones |
P13 | South | 60–80 | Female | Lung |
P14 | South | 40–59 | Female | Lung, Skin, Joints |
Relative | Place of residence | Age | Sex | Relationship to associated patient |
R1 | North | 40–59 | Male | Father to patient 1 |
R2 | North | 20–29 | Female | Daughter to patient 2 |
R3 | South | 40–59 | Male | Husband to patient 3 |
R4 | South | 40–59 | Female | Wife to patient 5 |
R5 | South | 60–80 | Male | Husband to patient 8 |
Personal aspects
“[…] I realized that all the physicians had never had a case like me […]. I googled a lot and asked around.“ (P10).“I’m just worried because nobody knows anything. For me as a father, that is the problem. Some of the doctors have never heard of it or don’t know how to act.“ (R1).
Diagnostic and therapy
“A correct diagnosis was only made by my sister-in-law. She is a pediatrician and specializes in pediatric rheumatology […]. Otherwise, we would have spent ages fiddling around with it.“ (P7).“This was a general practitioner who had studied other treatment methods intensively and he knew directly what was going on. He mentioned sarcoidosis with question marks.“ (P14).
“The first chronic symptoms, that was a lot longer ago. It took quite a while before it was diagnosed. She had symptoms for two to three years […]. Of course, it also took a while to get an appointment with a specialist. I think waiting for the appointments always takes three to four months, which of course also delays things extremely.” (R2).
“The first symptoms of the skin were 14 years ago, also from the lungs. […]. You were labeled a hypochondriac […]. The doctors never investigated the whole thing.“ (P14).
“I had the symptoms for years before, so definitely for ten years […]. Yes, I went to the physician once, but when they come to a physician in a rural area and cough […].“ (P11).
“[…] I bring my general practitioner and my neurologist brochures which I get at the sarcoidosis meetings so that they can get a little informed. It was not a familiar disease to my general practitioner before.“ (P3).
“[…] I feel like I’m on my own. If you are lucky, you find someone who takes care of you and if not, you don’t.“ (P1).
Daily activities
“The biggest limitation is this accompanying rapid tiredness. The inability to cope with stress.“ (P2).
“When it was bad, people in the underground sat away because they thought I had something contagious.“ (P4).
“I spend my whole life visiting the doctors […]. Basically, it’s good for me, but it bothers me in everyday life.“ (P3).“I get up early in the morning, feel good, think I can pull out trees, and then the symptoms worsen within seconds.” (P14).
“Eight hours of work is no longer possible because I have these fluctuations in tiredness […]. I also can’t stay up late anymore, you have your dead spot in the morning […]. I am always tired.“ (P12).
“I have also often noticed that because it is not visible, except after the surgery, it is a bit of a malingerer’s disease. “You don’t look sick at all”. Sometimes there is little understanding from other people.“ (P10).“I notice that I am making far fewer friends than I used to because I am just too knocked out.“ (P13).
“[…] Of course he [her husband] takes care of me and spends time with me.“ (P1).
“The exchange feels really good. Knowing that there are others who feel the same way.“ (P2).
“They are sometimes more competent than some doctors. They are affected people who often have more experience than the doctors.“ (P12).
Wishes
“First of all, the doctors have to become more competent. If they are competent, they would also know where to refer me or how to treat me better. But the problem is that the doctors have no idea about sarcoidosis.“ (P12).
“[…] More research and more international exchange. […] I don’t know why, but it’s a taboo topic. In Italy, you click once on a website, and you find sarcoidosis centers.“ (P10).