What is HD?

Huntington's Disease is a progressive degenerative neurological disease that causes total physical and mental deterioration over a 12-15 year period. Every person who has HD is born healthy and lives normal lives until symptoms set in. Oftentimes symptoms don't manifest themselves until the person is middle-age, after having children and passing the gene. However, with more HD repeats in the DNA sequence, symptoms can now begin at younger and younger ages -- even in pre-teens.
 

What are HD symptoms?

Symptoms usually evolve slowly, vary from person to person, even within the same family.
Some individuals may be affected first cognitively (depression, forgetfulness, impaired
judgment). Others suffer with motor skill impairment (dystonia or involuntary movements,
unsteady gait). Eventually, every person afflicted by HD requires full-time care.

Domains affected include: cognitive, motor and behavioral. Members of the same family
may exhibit different symptoms. Some can show mild involuntary movements (chorea)
and have more emotional/behavioral symptoms of HD or can have less emotional/
behavioral symptoms with more difficulty with involuntary movements.

Some HD Symptoms:

Behavioral/emotional

     Irritability
     Depression
     Anxiety
     Aggressive outbursts
     Mood swings
     Social withdrawal

How common is HD?

Huntington's Disease is affects 30,000 patients and 200,000 genetically at- risk individuals in the U.S. alone. It is considered one of the more common hereditary diseases. HD is as common as cystic fibrosis, ALS and Parkinson's Disease - but not as well known, nor as well supported in the community. That is what we want to change.

What are the major issues at play?

The devastation of losing family members to HD touch countless numbers. HD creates a ripple effect through families and their communities. Because it is a genetic disease, multiple generations suffer, thus easily overwhelm family resources. In the community, lack of information about the disease isolates members of HD families and impacts their ability to receive proper medical care. Simple things become difficult when facing them alone. Currently, it is difficult to find a place that will care for family members in advanced stages of HD.

The presence or possibility of HD affects decisions about careers, marriage and having children. The emotional, social and financial hardships involve everyone - whether they have the disease or not.

HDSA Orange County

There are many families in the OC who are working to manage living with HD. This is the ONLY local organization designed to help find vital information on care, HD resources, financial planning, legal issues, long-term care facilities, fertility options for HD-free parenting, and other services.

Through UC Irvine and their wonderful HD researchers, our new HD Clinic, the new Center for Excellence, the Annual Walk for the Cure and other education and awareness programs, we are making a HUGE difference here in Orange County!

Join us!

Sponsor, Donate, Volunteer, Walk! The Annual HD Walk for the Cure takes place every fall at UC Irvine's beautiful Aldrich Park.