Redwood City Resident Explains Life with a Rare Disease and Promotes Awareness for Rare Disease Day on February 28
Kathleen was diagnosed with the rare disease, Alternating Hemiplegia of Childhood (AHC) when she was 10 months old. AHC is a rare neurological disorder that is characterized by unpredictable, often painful episodes that leave a child temporarily paralyzed, on one or both sides of their body. The incidence of AHC is reported at 1 in 1,000,000 but is likely higher because AHC is often misdiagnosed.
- San Francisco, CA (1888PressRelease) February 26, 2015 - Twenty-four year-old Redwood City resident Kathleen has a rare disease and will take part in a global movement to raise important awareness for Rare Disease DayŽ on February 28.
Kathleen was diagnosed with Alternating Hemiplegia of Childhood (AHC) when she was 10 months old. AHC is a rare neurological disorder that is characterized by unpredictable, often painful episodes that leave a child temporarily paralyzed, either partially on one side or on both. With the discovery of a gene mutation in 2012, research has escalated to find a treatment and ultimately a cure.
"The incidence of AHC is reported at 1 in 1,000,000, but this is most likely higher as AHC is often misdiagnosed. Raising awareness and educating the public about AHC may help another family get the proper diagnosis ", said Lynn Egan, mom of Kathleen and President of the Alternating Hemiplegia of Childhood Foundation.
According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people. One in 10 Americans have a rare disease-nearly 30 million people-and two-thirds of these patients are children. For the 7,000 known rare diseases, there are only approximately 450 FDA-approved treatments.
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)-the rarest date on the calendar-to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.
For more information about this Rare Disease, visit http://ahckids.org/. See how AHC affects the lives of those living with the disease by watching our YouTube videos, https://www.youtube.com/user/AHCPresident.
Media contacts:
Lynn Egan, President of AHCF, 650-796-1910, lynn ( @ ) ahckids dot org
###
space
space
Satisfied Users & 
Approved Press Releases
Print
Email
Report Spam