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Patients Life stories Sander

Spotlight on Sander (the Netherlands)

  • Born in 1966
  • Living with lupus and antiphospholipid syndrome (APS)
  • Speaks Dutch & English
  • Writes a blog about his experiences with lupus
  • Has a teenage son and is dedicated to helping others with lupus

Sander was in his mid-20s when he started experiencing strange symptoms that he could not explain. After years of severe headaches, periods of double vision, inflamed joints, and lung pain, a pulmonologist finally diagnosed him with antiphospholipid syndrome (APS). With a diagnosis in hand, Sander turned to the Internet to learn more and found… nothing.

Even though lack of knowledge about his condition was a challenge Sander would encounter many times, his positive attitude and sense of humor helped him through. He went to a rehabilitation centre to help improve his functionality, and during that time, he was finally able to learn more about his condition. He took this information to his doctor, and they were able to work together to get him on treatment for APS.

But Sander’s problems with concentration continued to increase, and he was eventually diagnosed with lupus in the brain (NPSLE). Unfortunately, due to limited treatment options, Sander faces debilitating effects from his lupus every day. Since, as a result, he is no longer able to work full-time, Sander has a small business making Internet sites on his own time and maintains a blog to keep in touch with friends.

He understands that sometimes in rare diseases things go wrong and that to help others have a better experience living with lupus, there needs to be more knowledge. His goal in life is to raise awareness about lupus and inspire others to do the same.

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We must increase awareness, we must increase understanding, and we must hope the medical community continues to search for the treatments that can help us all. Sander