Community voices for changes in Huntington's disease
The Huntington's disease community must fix what is not working properly for us. Most importantly, it is time that patients and families take the lead in all conversations and procedures pertaining to HD. Since the release of our first award-winning film, "The Huntington's Disease Project: Removing the Mask," in 2015, we have been in the trenches fighting for our voices to be heard regarding the current diagnostic criteria.
The diagnostic criteria for Huntington's was created by The International Parkinson and , Movement Disorder Society (MDS), and the American Academy of Neurology (AAN). Although these organizations have tried to make tweaks over the last several years, the majority of patients and families we have interacted with for over a decade agree that the diagnostic criteria are archaic and do not benefit patients and families. We do not need tweaks, but a major overhaul, one guided by the global Huntington's community.
Sadly, thousands of patients are still turned away without a diagnosis and fall through the cracks in our systems. As of 2021, in most cases, the manifestation of chorea is the key to unlocking the door to diagnosis. However, there is hope on the horizon for all of us in the Huntington's community. What used to be considered "softer symptoms" - anxiety, depression, mania, insomnia, sexual promiscuity, fatigue, cognitive impairments (the list goes on), are slowly taking center-stage. We are turning the corner away from the old ways, and patients will finally be seen as individuals. Since 2009, WeHaveAFace has coined the phrase - Huntington's disease is not a one-size-fits-all disease. The Huntington's community can no longer be held back by diagnostic criteria that doesn't treat each patient individually.
We continue to have faith in our international community. We harnessed technology to connect with our HD/JHD patients and families through surveys and polls. We needed the vital data from our global community, and we received it! With the oversight of our Senior Medical Advisor, Dr. Herwig Lange (George Huntington Institute, Germany), we were able to produce a comprehensive assessment of patient and caregiver needs.
Anonymous Survey:
Launched: October 13, 2020
"Should the diagnostic criteria for Huntington's disease be reviewed and updated?
Important: The survey was specific to individuals who are experiencing symptoms of Huntington's disease and are unable to function as they did in the past. The survey was authorized and monitored by Dr. Herwig Lange of the George Huntington Institute, Germany. Dr. Lange is the Senior Medical Advisor of WeHaveAFace.
This survey touched on the following topics:
- “Do you believe that Chorea should NOT be the only factor to receive a diagnosis of Huntington's when other symptoms of Huntington's disease are present and affecting the individual?”
- “Chorea is not my/our main concern with HD.”
- “Me/my loved one experience memory, behavior, cognitive, and social issues.”
- “In the USA, without a diagnosis and medical coverage, I cannot afford to see a doctor.”
- “I/we believe that a person should receive the diagnosis without Chorea if they are suffering with other symptoms.”
- “I/we believe that if a person should have the right to know if they are positive or negative for Huntington's disease.”
- “I/my loved one have thought of or attempted suicide.”
- “Do you believe that the current diagnostic criteria for Huntington's disease should be reviewed and updated?”
Anonymous Poll:
Launched: March 1, 2021
"Why is a diagnosis of Huntington's disease important to you?"
WeHaveAFace invited the international Huntington's disease community to participate in an anonymous poll. We asked: "Why is a diagnosis of Huntington's disease important to you?" Below you will see the data we have received from the poll.
We believe it is time for significant changes to better the lives of our Huntington's and Juvenile Huntington's patients and families. The voices of the people must be the driving force in diagnosis, treatment, and research. From our discussions with HD families across the globe, and as a result of our surveys and polls, the diagnosis of HD should no longer be based on the presence of overt motor symptoms (chorea) but rather take into account all possible symptoms caused by Huntington's disease. As mentioned above, these symptoms include cognitive, emotional, behavioral, vegetative problems, interfering with normal function and quality of life. Patients and families will lead the way...
...hope is on the horizon!
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." - Margaret Mead