VIEW ALL OPEN LETTERS
To The Education Industry
Wendy Moore
To Stephanie A. Morris and SHAPE America Leadership,
SHAPE America owns the National Health Education Standards. That is not a small thing. It means that what SHAPE America decides belongs in health education reaches every textbook publisher, every state standards committee, and eventually every school nurse, every PE teacher, and every young woman sitting in a health class learning what her body is and is not capable of. The standards are not guidelines. They are the blueprint. When something is absent from them, it is absent everywhere they reach.
Lipedema is absent from them.
Lipedema is a lymphovascular disorder affecting an estimated 1 in 9 young women beginning in puberty. It deposits fat in the lower body in layers that do not respond to diet or exercise. It is progressive. It is not caused by caloric surplus. It cannot be resolved by a caloric deficit. And because nobody put the word in the standards, the PE teacher grading girls on fitness rubrics has no framework for the student whose legs are doing something structurally different from what the rubric assumes. He grades her on effort. She learns the lesson he is actually teaching: that her body is her failure.
Scoliosis affects 2 to 3 percent of the population. It has been screened for in American schools since 1963 and is mandated in 21 states. Lipedema affects an estimated 11% percent of women and has no screening protocol anywhere in the country. SHAPE America's standards are the reason that asymmetry exists in health education. Not the only reason, but the most structurally significant one. If the condition is not in the standards, it is not in the textbooks. If it is not in the textbooks, school nurses don't know the word. If school nurses don't know the word, the girl in the nurse's office with unexplained limb swelling and pain leaves with a note about hydration and goes back to class.
The diagnostic delay for lipedema averages 20 years from first symptom to correct diagnosis. An estimated 2.7 million girls currently enrolled in US K-12 schools have lipedema or will develop it before they graduate. None of their health classes include the word.
The diagnostic delay for lipedema averages 20 years from first symptom to correct diagnosis. Those 20 years are not spent in a vacuum. They are spent in schools, in PE classes, in locker rooms, in doctors' offices, and in the accumulated weight of being told by every institution you pass through that your body is your own fault. SHAPE America's standards are not responsible for all of that. They are responsible for the part that happens in schools, which is where it starts.
Please add lipedema to the National Health Education Standards as a recognized condition. Include it in the framework for understanding body systems, chronic illness, and the limits of BMI as a health indicator. The research exists. The prevalence data exists. What does not yet exist is a formal commitment from SHAPE America to include lipedema in the National Health Education Standards.
Sincerely,
Wendy Moore, Founder
Connective Truth Moore Family Charitable Foundation
