Dancing is her great passion – Jana L. distinctly shows this on her social media channels. She uses the attention of her thousands of followers to make her disease ME/CFS better known; a disease that makes physical exertion and thus also dancing mostly impossible. Why she does not let herself be stopped and how she otherwise rolls, she tells us on REHACARE.com.
Name: Jana L. Age: 21 City: Karlsruhe, Germany Occupation: At home for four years, unable to work, no training possible Impairment: For eleven years I have been suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Tachycardia Syndrome (POTS), Fibromyalgia and therefore I have been longer ill than I was healthy at all.
Jana L.: Everything, every little thing. I am grateful and happy for so many things!
What have you always been wanting to do and why have you never done this so far? Jana L.: I wanted so many things: To see the world, to ride a motorcycle, to do extreme sports... But I never got around to it because I fell ill when I was ten years old. My disease takes away my complete independence. I can neither make a sandwich nor sit in the car for more than 30 minutes. Often I can't even get out of the house in a wheelchair for weeks, I can't even keep myself busy at home and have to spend most of my time lying down and resting. There is no need to think about all this. I would dare to do anything!
Which person has influenced you most? And why? Jana L.: My mom! I spend my time with her 24/7. She is always there for me – she is my mother, best friend and carer. She makes my situation bearable and from her, I take the strength to fight.
You have the chance to become the Commissioner for the Disabled. What would you do first? Jana L.: To create a project, so that all politicians experience on their own how it is to live with all kinds of diasbilities or what it's like to need a wheelchair, and how many barrieres there are still for diasbled people. I think, that one can only understand disabled people and really want to change something, if one learns it the hard way.
What is especially near and dear to you? Jana L.: That my disease ME/CFS is finally better known and – above all – recognized! Many doctors do not even know it and therefore often blame the condition on the psyche.
I would like to be once...
Jana L.: A dancer, but preferably healthy.
To which question would you like an answer?
Jana L.: Why do many people not understand that, despite being in a wheelchair, you can move your legs or even stand for a short time, or that not every disability is directly visible?
What I wanted to say...
Jana L.: Be thankful for every little thing and every moment in your life – someone else would give so much for just that. Health and happiness are the most important things.
What makes other people actually happy in life? If you ever wondered, you have come to the right place. In regular intervals REHACARE.com asks a varity of people always the same questions. What results from that? Read for yourself!