Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.

Life Goes On

It has now been over five months since my sister Shannon passed away of Huntington’s and all around me life goes on.  After years of being beside her through her journey and putting all my energy into trying to always be a good sister to her especially the last three years, there is a strange and unfamiliar inner peace inside me which I have not felt in many years.  My other sister and I did everything in our power to make her life as happy and comfortable as possible.  We showed her all the love we possibly could.

To My Newest HD Angel

After years of my watching her progression from a front row seat, my oldest sister finally passed away almost two months ago now. I have been dragging my feet at writing this final chapter of her life as I knew it was going to make me sad all over again and stir up all the grief I still feel in my heart for her.

In the five weeks before her death she had a stroke and as her sister, seeing her in diapers and then having to be fed minced food as she had lost the ability to chew with the stroke, I was saddened at the further hit to her pride.

HD and Cancer

Splitting cancer cells

I recently had my annual full body scan by my dermatologist for skin cancer.  When he entered the examining room I threw my hands up and said, “I plead guilty to running shirtless in the summer without sunscreen!” It was obvious from my perpetual upper body tan, which fades a little in winter.

2CARE Study Ends Early

The Huntington Study Group has ended its Phase III trial of CoQ10 early because of futility.  The study has been going on for a number of years now and early analysis of the data indicates that it is very unlikely to prove to be effective.

It’s time to discontinue CoQ10 as a supplement.   Mouse studies discussed here at the Lighthouse have had inconsistent results which is why we were not hopeful that this supplement would work.

Staying Sane

Staying sane while living with Huntington's and dealing with affected family members can he a huge challenge for HD families. We are all set to different levels of sanity so some of us have more to spare then others do. I have always found it funny that it is the insane people who believe themselves to be completely sane but it is the sane people who actually question their sanity. So if you wonder if you ARE crazy it is actually proof that you are not. Crazy but true.

Huntington’s Disease and Social Security Disability Benefits

Like many other illnesses, Huntington’s disease can strike without warning—changing a person’s life forever. In the days, weeks, and months following a diagnosis of Huntington’s disease, it is important to plan for the future. Although it is important to discuss medical and supportive care options, you should also make financial plans.

If you or a loved one has Huntington’s disease, it may become necessary to apply for Social Security Disability benefits. Disability benefits can provide financial support to those who can no longer work due to disability or illness.

Donating Blood With The HD Gene

Will giving blood

It’s fine to give blood when you’ve tested positive for the HD gene. I was a regular donor when I found out I had it and one of the first things I did was to check to see if I could still give. At the time I was a blood drive sponsor for a North Carolina agency and had access to the full Red Cross eligibility manual. It said, “… donors with the Huntington’s Disease gene are acceptable as long as any involuntary movements will not affect the donation process”.

When It’s Time To Quit

I’ve written before about finding excuses not to take proactive steps to fight the Huntington’s Disease demons. I’ll try to never quit that battle. However, there are some times when you have to stop doing something, like driving, to insure your safety and that of everyone else on the road. That’s a very difficult thing to do, since it means losing your freedom and admitting that the disease has gotten the better of you



Perspective is the ultimate way to be able to put the things that happen in life into proper focus. How we view things has everything to do with how big a deal we make of some things. There are always three choices in any given situation: Give up, give in or give it all you've got. Time is going extremely fast and in just two days from now, tomorrow will already be yesterday.

I had been a Home Support worker for years before I was diagnosed with HD. This would prove to be a huge benefit to me and helped me to put my HD in perspective.

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