Cystic Fibrosis Resources

Cystic Fibrosis is a genetic disease that affects the lungs and digestive system. An estimated 30,000 children and adults are affected. This disease clogs the lungs and leads to life-threatening infections. For more information, click on the links below:

Medical Sites

American Lung Association
Genetics Home Reference
Kids Health
March of Dimes
Mayo Clinic
Medline Plus
WebMD
Wikipedia

Organizations

Boomer Esiason Foundation
Cystic Fibrosis Foundation

 

 

Warm Weather Precautions Resources

As the summer begins to heat up, now is the time to put warm weather and safety precautions into place. Children and adults with disabilities should:

  • Drink┬áplenty of fluids
  • Use an air conditioner when possible
  • Take a cool bath or shower
  • Wear loose fitting clothing

For additional information click on the link below:

Extreme Heat and Health Problems- Disabled World
Health and Safety Alert- Ohio Department of Developmental Disabilities
Health and Safety Alert for Caregivers of Individuals with Developmental Disabilities- New Jersey Department of Human Services
Hot Weather Tips- Family Caregiver Alliance
Summer Safety Precautions- New York Office of People with Developmental Disabilities (download PDF)
Three Ways Weather Affects People with Disabilities- Essential Accessibility

Edwards Syndrome Resources

Edwards Syndrome also known as Trisomy 18 is a rare disorder caused by an extra copy of the 18th chromosome. Edward syndrome occurs in 1 in 6000 births and will affect female more than males. It is also the second most common trisomy after Down Syndrome

Symptoms
  • Clenched hands
  • Crossed legs
  • Low birth weights
  • Developmental delays
  • Microcephaly (small head)

Resources

Medical

emedicinehealth.com

Medscape Reference

WebMD

Genetics Home Reference

Wikipedia

Foundations

Trisomy 18 Foundation

Lucina Foundation

Family Blogs

Loving Life with Full Trisomy 18

Kayli is Loving Life Trisomy Style!!

Our Trisomy 18 Journey

Ring Chromosome 22 Resources

Ring Chromosome 22 is a rare genetic condition caused by an abnormal chromosome 22 that forms a ring which causes both arms of the chromosome to break. Below are some resources on Ring Chromosome.

  1. WEBMD
  2. Genetics Home Reference
  3. Wikipedia
Organizations
  1. Chromosome 22 Central
  2. Ring22.org

 

Happy Holidays

The Special Needs Blog wishes you and yours a happy holiday!

happy holidays

Cold Weather Precautions Resources

Mayo Clinic- safety tips for exercising outdoors

Winter preparedness tips for persons with disabilities

Winter storm safety checklist

Wind Chill Chart

Tips for Winter Weather Preparedness for People with Disabilities