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Lupus: A Medical Mystery

What happens when you know your child is sick, but no one can tell you what's wrong...sometimes for years?  Lupus, a debilitating disease, is still a medical mystery.  Join Dr. Winnie King as we attempt to unravel this mystery on a full-show episode of Keeping Kids Healthy. Without a single known cause, no simple test for diagnosis and symptoms so vague and so varied, Lupus can often elude the doctors trying to detect it.  But learning about Lupus is actually the first step in detecting it. You'll hear from a young woman who lived with Lupus since she was 14 but wasn't diagnosed until 22; a 13 year old who was only diagnosed last year; hear the story of how one mother refused to give up until her daughter's condition was diagnosed and hear a Lupus expert discuss symptoms, treatments, care and the latest news on medical advances in Lupus research.

Topics Covered:

  • What is Lupus?
  • Symptoms of Lupus.
  • Diagnosing Lupus.
  • Why is it hard to diagnose?
  • What is it like to live with Lupus? 
  • Having Lupus even though you "don't look sick"
  • Treatment and care for those with Lupus.
  • Living every day with Lupus.


Guests:

  • Christine Miserandino - 26 yrs old (began getting sick at 14 and diagnosed with many things for eight years. Only diagnosed with Lupus when she was 22)
  • Janet Miserandino - Christine's mother
  • Natalie Fouche - 14 years old (diagnosed with Lupus at age 13)
  • Marie Fouche - Natalie's mother
  • Thomas Lehman, MD - Chief, Division of Pediatric Rheumatology at the Hospital for Special Surgery in New York, NY; Professor of Clinical Pediatrics, Cornell University Medical College; Author of more than 40 published works including It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Join Pain, Rheumatic Diseases and the Latest Treatments.

Things to know:

  • Lupus is incurable and the symptoms are random and impact normal living, BUT through proper self-care and early diagnosis, day-to-day living can be as normal as one can get living with a chronic disease.
  • Oftentimes children with Lupus may look healthy but complain of body pains and fatigue. Their regular pediatricians may not be as perceptive about the symptoms of lupus, so it is up to the parent to be a strong advocate for the proper care of the child and have them see a specialist.
  • It's important to be aware of the symptoms and follow up if you're concerned that a doctor may be missing them in your child. As we often tell parents/caregivers, they need to be aggressive with the care of their children when they don't feel that they are getting the appropriate answers from doctors.  They need to be an active participant with the doctors to ensure the best care for their kids.


Resources:

Books/Publications:

  • Booklet for Teens from The Hospital for Special Surgery, NY
    866-812-4494

Associations/Support Groups: