“Invisible Heroes” Campaign
A true superhero’s power is invisible. Just like many rare diseases.
The non-profit organisations EDS Lëtzebuerg and ALAN Maladies Rares Luxembourg have teamed up to launch a campaign to raise awareness for rare, invisible diseases.
Together with our 21 campaign heroes, we want to show that:
- rare diseases are not always visible
- even if someone looks “fine”, they may be struggling with a chronic disease, that causes constant pain, fatigue, nausea, etc.
- it takes strength and courage every day to face the challenges of life with a rare disease, but even more so to face people’s prejudices
- a rare disease changes your life, but it does not define who you are
- people with a rare, invisible disease are not looking for pity, but understanding.You can support them by; believing them, listening, not comparing your situation to theirs, being open and non-judgemental and by sharing this campaign and joining the discussion on Facebook & Instagram !
A huge THANK YOU to the heroes of this campaign, for opening up and showing us that despite living with a rare disease, you can enjoy life to the fullest and have fun.
If you would like to learn more about the challenges associated with a rare disease, take a look at our dedicated webpage.
Our heroes
Jessica alias Babbelkëscht (Chatterbox)
Age: 38
Disease: Ehlers-Danlos Syndrome
Symptoms: hypermobility, dislocation, joint pain, migraines, distension, arthrosis, asthma, allergies, light- and odour-sensitivities, digestive issues…
Superpower: annoying laugh
Philosophy: Live and let live
Greatest wish: more understanding from doctors and Society in general
Lynn alias SuperMOM
Age: 33
Disease: Behçet disease
Symptoms: oral aphthae, inflammation of the gastrointestinal tract, joint inflammation, thrombophlebitis
Superpower: Power of Endurance
Philosophy: He/she who fights can lose, but he/she who does not fight has already lost!
Greatest wish: good health for my family
Abby alias Sunshine Girl
Age: 11
Disease: Rare genetic defect TPI1
Symptoms: dystonia, fatigue, pain
Superpower: constantly beaming and happy
Philosophy: Always smile no matter what
Greatest wish: To be able to go where I want to, when I want to, without any help
Stephanie alias Roude Blëtz (Red Lightning)
Age: 38
Disease: Addison Disease
Symptoms: fatigue, fainting, nausea, loss of appetite, joint pain
Superpower: Always getting back up
Philosophy: Take it as it comes, you can’t change it anyway
Greatest wish: to not be pigeonholed
Ben alias Super Bo
Age: 8
Disease: Ehlers-Danlos Syndrome
Symptoms: tummy pain, hypermobility, clumsiness,
Superpower: annoying people
Philosophy: Being strong means getting up every time you get knocked down
Greatest wish: to feel and be better
Alexandra alias Ninja
Age: 33
Disease: narcolepsy with cataplexy and restless legs syndrome
Symptoms: excessive, brutal and sudden fatigue, sudden loss of muscle tone, sleep paralysis with hallucinations, poor sleep quality with severe astral nightmares …
Superpower: overcoming all sorts of obstacles through running, climbing, swinging, acrobatics and precision (adrenaline)
Philosophy: “Only the sky is my limit”, “Be strong, Take care”, “Challenge yourself everyday”
Greatest wish: a cure, more awareness, simplified bureaucracy, more understanding, for the government to not lump everyone together
Sylvie alias Super Moma
Age: 57
Disease: EPP (Erythropoietic Protoporphyria)
Symptoms: extreme pain when I go into sunlight, all year round
Superpower: being human
Philosophy: Never give up
Greatest wish: more financial means for rare disease research
Samantha alias Wondergirl
Age: 10
Disease: Ehlers-Danlos Syndrome
Symptoms: hypermobility, dislocations, bruises, scoliosis, asthma…
Superpower: asking silly questions
Philosophy: Don’t rack your brain about things, you’ve only got one
Greatest wish: a cure
Marielle alias Beiekinnigin (Queen Bee)
Age: 31
Disease: Charcot-Marie-Tooth
Symptoms: weak muscle strength (progressive atrophy), pain, loss of touch sensation in the legs, feet, toes, and fingers, balance problems, quick exhaustion from daily activities, regular falls
Superpower: my smile, my empathy, my singing voice
Philosophy: Throw kindness around like confetti!
Greatest wish: to be physically stronger in the future so life can be a bit easier
Samantha alias Phoenizia
Age: 34
Disease: Myasthenia Gravis
Symptoms: muscle weakness, vision problems, trouble swallowing, breathing problems, impaired mobility
Superpower: « Le pouvoir de renaître de ses cendres après s’être consumé. » (the power of being reborn from one’s own ashes)
Philosophy: He/she who fights can lose, but he/she who does not fight has already lost!
Greatest wish: to be there for my kids for as long as possible
Jean-Paul alias Chiari Warrior
Age: 56
Disease: Arnold-Chiari malformation type I
Symptoms: pain, dizziness, fatigue, swallowing problems, scoliosis, compression of the nerves and spinal cord, herniated discs
Superpower: family & nature
Philosophy: A day without laughter is a day wasted!
Greatest wish: for doctors and other people to be more understanding