Online Platform myHDstory Asks HD Patients to Share Their Experiences
When I share with others that my wife, Jill, has Huntington’s disease (HD), I often receive a blank stare in return. Because it’s a rare disease, most people have never heard of it. When I tell them how terrible it is, they usually respond with expressions of sorrow. I am grateful for their empathy, but words won’t help Jill or anyone else who has this horrible disease.
Empathy combined with actions will, which is why I was happy to read about a new research project sponsored by the Huntington Study Group (HSG). The organization, which has been conducting research about HD for more than 25 years, recently rolled out a new platform to help promote awareness about how HD affects patients and caregivers, and about those who may have a genetic risk for the disease.
The platform, called myHDstory, includes a new online research study titled Making HD Voices Heard that is now enrolling participants.
I value an empathetic mindset because I’ve learned that to truly understand someone’s problems or needs, I must see the world through their eyes, which is exactly what HSG is attempting to do with this project.
“When you participate, you will be asked to think about problems you face,” Dr. Karen Anderson, the study’s principal investigator and a professor of psychiatry and neurology at Georgetown University, said in a video explaining the project.
“Some of these problems may be hard to think about or may bring up uncomfortable feelings,” she added. “We ask you these questions because understanding your personal experience living with HD helps us make research more focused on you.”
By mining what HD patients feel and experience with their illnesses, health, and well-being, HSG hopes to “develop meaningful outcomes to use in clinical trials of experiential treatments,” she said.
Anderson emphasized that the study seeks to empower HD patients 18 and older to “have a voice in how research studies and care are designed and provided.”
The online survey takes about two hours to complete. HSG hopes to enroll up to 500 participants who have been diagnosed with HD. Enrollment is open for three months.
My wife is participating, and I hope that all of those who share their answers will help clinical researchers, doctors, and pharmaceutical companies in their quest to ease the suffering HD patients face. Maybe it could even push forward efforts to develop a cure, because every little bit helps.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
About the Author
Mike Mongan
My darling wife passed away last August at 81 yo. I believe our vegetarian lifestyle helped to keep her alive so long. she also practiced yoga for many years.
Carlos Briceño
I am so sorry for you loss. I am happy to hear she had a long healthy life. That is my hope for all of us!
John Michels
Carlos, thank you for continually posting here. It is always interesting to read about your current experiences.
I am curious for your thoughts on the PTC and Branaplam PH II trials that are just starting up. It seems as though these could be truly promising options in the next few years for patients suffering from HD.
Have you looked into these potential treatments?
Carlos Briceño
Thank you for reading my columns. I hope that what I share here is helpful to others. I try to keep up with the latest developments for HD patients. I find it helpful when discussing things with Jill’s doctors. I have hope that one day I won’t have to write this column.
Lance Stockwell
I am so sorry for your loss. At what age was she diagnosed with HD? I am 55 and was just diagnosed last year.
Carlos Briceño
I am sorry that you have had a positive diagnosis. It is never easy to hear those words. Keeping positive and talking about her issues has always helped Jill cope with hers.