Conditions
A kidney disorder, also called nephrotic syndrome, where damaged kidney filters cause protein leakage into the urine, leading to swelling (edema).
While the exact prevalence and impact are still being studied, providers should be aware of these potential issues and manage them according to standard clinical practices.
Puberty & Sexuality
Just like their peers, individuals with Chromosome 8p rearrangements will go through the stages of puberty, though the timeline and experience may vary. They may experience changes such as:
- Growth spurts
- Development of body hair
- Changes in voice
- Menstruation in females
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Open and honest conversations about these changes can help prepare them for what to expect. Visual aids, social stories, or step-by-step explanations can be especially helpful.
An essential aspect of sexuality education is teaching personal boundaries. It is important to discuss:
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- Private and Public Behaviors: Explain which behaviors are appropriate in private versus public settings.
- Consent: Teach them to understand and respect personal space, as well as their right to say “no” in uncomfortable situations.
- Safe Touch: Discuss the difference between safe and unsafe touch in a way they can understand.
- Visual Aids: Use visual supports, social stories, or role-playing to discuss changes and behaviors.
- Repetition: Regularly revisit conversations to reinforce understanding and address new questions.
- Professional Guidance: Consider involving healthcare professionals, such as a therapist or counselor experienced in developmental disabilities, to provide additional support.
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Every individual is unique, and discussions about puberty and sexuality should be tailored to their level of understanding and communication abilities. By providing clear information and support, we empower individuals with Chromosome 8p rearrangements to navigate puberty and develop a healthy understanding of their sexuality.
Moving Mountains Conference Presentation:
University of Michigan Disability Health Research: Sex Education/Puberty Resources for Individuals with Special Needs/Disabilities and for their Families, Partners, Caregivers, and Educators
https://disabilityhealth.medicine.umich.edu/sites/default/files/downloads/SexEducationResources.pdf
Vanderbilt Kennedy Center: Healthy Bodies for Girls.
https://vkc.vumc.org/HealthyBodies/girls.html
Vanderbilt Kennedy Center: Healthy Bodies for Boys.
- Growth spurts
- Development of body hair
- Changes in voice
- Menstruation in females
- Private and Public Behaviors: Explain which behaviors are appropriate in private versus public settings.
- Consent: Teach them to understand and respect personal space, as well as their right to say “no” in uncomfortable situations.
- Safe Touch: Discuss the difference between safe and unsafe touch in a way they can understand.
- Visual Aids: Use visual supports, social stories, or role-playing to discuss changes and behaviors.
- Repetition: Regularly revisit conversations to reinforce understanding and address new questions.
- Professional Guidance: Consider involving healthcare professionals, such as a therapist or counselor experienced in developmental disabilities, to provide additional support.
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This visualization is powered by research sponsored by Project 8p and survey data collected from the Chromosome 8p Registry, representing insights from a total of 120 8p heroes. It is part of the soon-to-launch Insights Portal, designed to offer advanced tools for data analysis, access, and visualizations, accelerating research and discovery for chromosome 8p disorders.
