This Sunday marks the internationally-observed Rare Disease Day. It is estimated that 30,000 people in Luxembourg are suffering from such a condition.
A disease is classed as rare if fewer than 1 in 2,000 people have it. A large majority are genetic conditions, which can either be chronic or acute. Diagnosing them correctly is often tricky and slow; in several cases there is no treatment.
Due to the pandemic, very many people suffering from rare diseases have been asked to shield as they are particularly vulnerable to Covid. This week, the health ministry and the organisation Alan launched the campaign “Light It Up” to highlight the predicament of those people.
Since Wednesday several buildings have lit up in various colours, including a water tower in Luxembourg City, the “Colonnes des Nations” monument in Schengen and three hospitals.
“Each day is a challenge”
Eve Peters is one of those people. She suffers from Hereditary angioedema, a genetic condition that results in recurrent attacks of extreme swelling. It took 12 years to diagnose her correctly. A blood test eventually brought the condition to light.
She remains in good spirits. Sulking is not an option for her, she says. She tries to approach each day in the same way, which also involves working for her parents’ business.
Eve recently celebrated her 30th birthday. Unfortunately, it was not a happy celebration for her. The disease caused yet another attack on her special day, she describes.
The pandemic is also taking a heavy toll. During the first wave she shielded completely from her family for three months. Vaccination is not an option either; the vaccines are not safe for people with her condition.
Yet, Eve refuses to give up. Each day is a challenge for her but she says that does not stop her from trying to enjoy life.
RTL Today's Lisa Burke covered Rare Disease Day in the latest edition of her podcast - catch up here.
