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Edith van de Bovenkamp

Edith lives in the Netherlands, where she works in healthcare as a first aid, fire and safety, and drug and alcohol instructor. Recently widowed, she is a devoted mother and grandmother to her three sons and three grandchildren.


In 2021, Edith's life took a dramatic turn when she experienced the challenges of DRESS Syndrome. Her battle with DRESS began after being hospitalized for a knee infection and prescribed the antibiotics Cefuroxime, Levofloxacin, and Rifampicin. For weeks, Edith suffered from symptoms such as high fever, severe rash, nausea, and organ involvement (kidneys and heart) She became increasingly frustrated with her medical team as they delayed making the correct diagnosis and stopping the offending medication(s). She felt like her voice wasn't being heard. Her condition was finally properly assessed and diagnosed by an orthopedist who started her on high-dose prednisone treatment.


After recovering from DRESS, Edith developed multiple autoimmune diseases, including rheumatism, hypothyroidism, lupus, and lichen sclerosis. She also lost her sense of taste and experienced impaired hearing, along with persistent fatigue. Her skin remains very sensitive, and, like many DRESS survivors, she's developed a fear of taking medications, going to the hospital, and falling ill.


Edith is well aware of how exhausting DRESS can be on someone's body, physically and emotionally. The multitude of new symptoms that can occur during and after recovery demands a lot of strength and time for patients. She understands how important it is for a patient's survival that medical providers are educated about DRESS Syndrome and can properly diagnose and treat this disease.


Motivated by her experience with DRESS, Edith has become deeply involved in the DRESS community, educating others about this disease and assisting those suffering from it. She also works tirelessly as a volunteer and helped establish the Freedom Flame Foundation, inspired by the freedom tulip in Wageningen, symbolizing world peace and freedom for all.

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