“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