Living with a chronic disease: testimonies from patients with sickle cell anaemia and autoimmune diseases

Beyond diagnosis, there is life. What are the day-to-day realities for people with sickle cell anaemia or autoimmune diseases? Here are some inspiring and authentic accounts.

Fighting pain every day

  • Testimony from Fatou, who has sickle cell anaemia: "My attacks keep me in bed, but I've learnt to listen to my body".
  • Sophie, lupus sufferer: "Fatigue is invisible, but very real".

The psychological and social impact

  • Isolation, lack of understanding, medical wandering
  • The need for psychological support
  • Importance of family support and discussion groups

Adapting your life to illness

  • Work or study arrangements
  • Taking care of your diet and lifestyle
  • Practising a suitable physical activity

Fighting to raise awareness

  • Creation of associations
  • Speaking out on social networks
  • World days to advance research

? Share your story: it can help other patients feel less alone.

Leave a Reply