What do you want others to know about lupus?

If you have a child (especially a girl that just entered puberty) that begin suffering from symptoms, like loss of energy and concentration, stiff joints, sudden on set of Reynaud’s syndrome etc. Push the doctors to perform extensive blood work and tell them all the changes that are taking place with your child. Early detection means a better quality of life.

Why is lupus a cruel mystery to you?

My 17 yr. old daughter was diagnosed at 12 ½ yrs old. She was high energy, good in school, played sports and loved to be outdoors. In the fall of her 7th grade year, everything changed; she could hardly get out of bed and developed Reynaud's, asthma, said that concentrating anything was like looking through a brick wall. She was diagnosed 4 months after symptoms developed with Lupus SLE, plus other disorders. She had surgery on her stomach/ esophagus and gallbladder removed last summer. Despite all the doctors’ appointments and hospital visits and frustration at times with being ill, she is still unstoppable! She manages her symptoms and medications well; she gets enough rest, eats well, pays attention to what her body is telling her and knows her limits. She is the ultimate time manager. She maintains a high GPA, takes AP classes, fences, surfs, is a Girl Scout, volunteers etc. College is on the horizon, and she is talking to the Disabilities Offices of the universities proactively regarding accommodations for her life long illness. She is leaning toward International Relations, hopes to internship at the UN, and wants attend Oxford University. Her dad and I are very proud of her. Her tenacity, dedication and management of her life with Lupus will ensure her success as she continues to grow into adulthood.

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