Searchalot

Internet Directory - Top : Health : Conditions and Diseases : Genetic Disorders : Personal Pages

Top : Health : Conditions and Diseases : Genetic Disorders : Personal Pages (15 web sites)
Batten Disease
Cystic Fibrosis
Down Syndrome
 Related Categories
Health: Resources: Personal_Pages
Society: Disabled: Personal_Pages
 Related Web Pages

Ashly's Skeletal Dysplasia
A mom describes her daughters disorder which is thought to be a metabolic disease similar to mucopolysachharisdoses. Also links to other related sites.
http://www.angelfire.com/or2/ashlysworldofwonders/about.html

Caleb's Courage
Several videos about a baby's fight with MPSI-Hurler Syndrome.
http://www.youtube.com/watch?v=BFfYPSlKOTY

Daniel Raymond Wickman
Provides information about the chromosomal disorder, Trisomy 18. Includes a blog about the pregnancy, birth, and life of the author's son Daniel and links for support and education.
http://www.danielraymondwickman.weebly.com/

In Balance with Arm Prosthesis
Personal story of a woman with a congenital reduction defect of her right forearm and how she achieved her present balanced state.
http://sites.google.com/site/armprosthesis/

MCAD Angel
Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.
http://mcadangel.com/

Mowat-Wilson
Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
http://www.mowatwilson.org/

Robert Kenneth Picklesimer
Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
http://www.picklesimers.com/robert_kenneth.html

Stephanie Jude Kuleba
Site set up in memory of Stephanie to promote awareness of malignant hyperthermia, a rare genetic disorder.
http://stephaniejudekuleba.org/

Story of Robert Purkis
A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him improve his quality of life.
http://swpurkis.pwp.blueyonder.co.uk/index.html

Trisomy 18 Angel
In memory of Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
http://www.trisomy18angel.com/