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Project CHANGE Survey Results

October 2021

Survey Guidelines:

We respect and value your privacy. Your name is not mandatory to complete this petition, however, your participation will make a significant impact on changing the diagnostic criteria for Huntington's disease. We must do all that we can to ensure that our patients receive a diagnosis when they need it to obtain the vital supports and services now! Your information will only be used for this project. We will ensure that all data collected is secured.

5,544 of our patients/caregivers participated, and saturation was reached via early review of data on November 15, 2020; however, the survey remained open until January 7, 2021, for additional data collection.
Overall: over 95% of our patients and families surveyed agreed that the diagnostic criteria for Huntington’s disease should be reviewed and updated.

Participating Countries:

USA, Canada, Mexico, Argentina, Brazil, Germany, England, Scotland, Ireland, France, Australia, Finland, Sweden, Netherlands, New Zealand, Belgium, Greece, Chile, Venezuela, Colombia, Spain, Poland, Italy

Survey Distribution and Participapatory Support:

WeHaveAFace - USA, Canada, Germany, England and Wales, George Huntington Institute, HDReach, HDCare, HDSA Chapters, HDA - Huntington's Disease Association, AMEH - Mexican Association, HSC Huntington's Society of Canada - Toronto Chapter, ABH - Associação Brasil Huntington, Birmingham and Solihull Mental Health NHS Foundation Trust, School of Medical and Health Sciences, Perron Institute for Neurological and Translational Science - Edith Cowan University, Seth Rotberg - Patient advocacy consultant Co-Founder/Producer at Our Odyssey

Survey Comments:

*Each of the following comments is reported exactly as they were provided within the survey.

I am trying to get tested but have not gotten the movements yet but I have other things going on like depression anxiety and I am still trying to work but I am over the entire process. Please help!

doctors won't see me until I get the movements and this isn’t right

I suffer from anxiety and depression lost my job of 10 years bc I can't consentrate. I was told I won't have the test before movements come on. This is making me so mad.

Why don't they get it at my HD center? Diagnosing patients mean so much because without it waiting will only hurt us!

The psychiatric issues are the most problematic symptom in our family members with HD. My mother has HD and is close to the end. She never had many movements but turned to alcohol and other self medicating choices. She was only diagnosed in 2017 but her decline is bad. We had a rough time getting her blood test done because the doctors said she didn't have chorea but I pushed many times and they finally agreed. They won't test me even though I want the test. It's sad

My mom died from HD two years ago and I took care of her with my little brother. The center of excellence nearest me did not want to give me the test because I didn't have motor problems but I was/am suicidal and depressed at the time and I have no medical insurance and can't work because I can't focus. I hope this helps to get the change we need.

I had to find a doctor and tell them about this disease. I was told that I can't get the test done by one neuro because of no body movements. My pcp was the one there for me and my family and I also cared for my dad who died from it. The process is bad here in our country and the diagnosis will give people the medical treatments because we are not like the other countries with free meds

my husband died of this disease and only got his test completed on the third visit to the physician and I begged and pleaded for the test to be done. They finally said yes. He shouldn't have gone through this the way he did. He had very little movements up until he left us.

I was told that I would not get a diangosis until I show chorea but my regular doctor understood what I was going through and gave ne the test. My CAG is 45

I and family noticed mood changes long before my mothers movements became very noticeable

I believe the mental and the mood change should be evaluated first. my grandmothers moods greatly changed before we noticed the movement.

I tested positive in 2016, first neuro had concerns about onset due to cognitive decline, anxiety, panic attacks, depression, suicidal thoughts, short term memory issues

A wealth of empirical research in addition to lived experience shows that the traditional view of HD onset is flawed and related diagnostic criteria offer limited insight into the needs of those living with HD.

Very hard to access support and help, and even to be beloved to be symptomatic of Huntington’s when all the symptoms displayed are psychological. Years of that that exacerbates depression and anxiety.

My wife was diagnosed in 2013 and has family history of this disease. I am totally in favour of this.

In addition to changing the diagnostic criteria, we need to be better educating new doctors. Some NEUROLOISTS still think "there is nothing you can do" and send the patient home!!!

I have adult onset HD. My first symptoms were cognitive. Please change the current diagnostic criteria

Currently watching this happen in diagnosis and care

I’m shocked that my daughter’s doctor who is part of a well known HD center will not listen to us about her psychosis and anger. She needs help she needs a diagnosis now. She will lose her job I know it.

I am exactly in this position experiencing symptoms but no motor issues, please help us all.

I fully support this petition

For years we have been hoping for this. Who ever is in charge of this better look at our needs and change it soon!

As a caregiver for my husband who passed away recently from HD, and an NIH grant recipient to perform Huntington’s research, I have an unusual perspective on this horrible disease. Resources are limited for assistance, and many patients are not eligible until an official diagnosis. The “soft”symptoms, non choreic, can manifest a decade before overt movement. Change the criteria.

The diagnostic criteria for Huntington’s disease should certainly be changed. I am very familiar with HD having lost both of my siblings, my father and other relatives to the disease. Everyone of them with the exception of my sister had cognitive and emotional disturbances long before motor problems were visible. These problems were devastating to both the patient and the entire family.

I’m a Huntington’s Disease Patient who has started to get Chorea and Seeing things that aren’t there But I was Diagnosed With Huntington’s Disease Before The Chorea & The Seeing Things That Are Not There! I Would Like Someone To Talk To About This!!! All the best, to the warriors. May God bless you all.

My first husband and son went years before they got a diagnosis. Friends and family did not know what was going on so did not understand it. They are HD Angels now. The diagnostic criteria for Huntington disease must change.

As a previous NY resident, I was tested there. It was a grueling 3 month process!! Totally unnecessary to put patients through such an extensive, stressful process!!

I agree the laws need to be changed

HD is not just a movement disorder. The HD-mutation is present and active since conception - but it may affect your life potentially very late in life, or wit low CAG-repeats even never.

Large family with HD. Nieces and nephews starting to show symptoms. Movements are not the issue and they are not doing good in school and the doctor won’t do anything.

The importance of a patient having a correct diagnosis from the beginning of the disease could help prevent and prepare their environment to have a dignified life for everyone.

You have my support and everyone in my famliy! Too many in my family received a diagnosis late.

Thank you for putting this together. As someone who is pre-symptomatic, I can relate and want to help change the diagnostic criteria for HD. In order to do so, I believe we need to look at biomarkers that can lead to earlier diagnosis which can then allow more people to participate in clinical trials. According to researchers and data, biomarkers such as the striatum and neurofilament light chain, could help us change the diagnostic criteria.

Globally, too many patients are not receiving a diagnosis due to there lack of overt motor symptoms/motor onset (chorea). This is unacceptable and cannot be allowed to continue.

We need to change the current diagnostic criteria!!!!!

My daughter did not have physical symptoms when she was young from first grade to high school she had behavior problems. They put her in special education because she had problems learning. She got to go to some classes with other kids her age. They always tried things at school that they learned for special needs behavior. In junior high and up the teachers kept calling me and giving me lectures about my daughter's behavior. I called a neurologist in my city and he would not test her because she had no physical symptoms. I got upset and sent an e-mail to the Huntington's Disease social worker for Indiana. I met when my husband was sick. He got a neurologist in Indianapolis for us. She tested positive. I knew because I saw my husband who had no symptoms till later stages. That was 13 years ago that she got tested. Her physical symptoms are just now starting to be a little more visible. We were blessed that we got help, but some do not. I am in support of this petition.

What if they had this disease? Maybe they would understand things better!? I've always hated hearing about soft symptoms at these conventions but they are the symptoms that destroy us all! Not chorea!

Dr. Jessica Shultz is referred me to a clinical psychiatry who confirmed her concerns She immediately dionsed me with early onset. A couple months later I got a second opinion and was seen by a neurologist at the Huntingtons research center in Houston TX. He agreed that Dr. Shultz diagnosis of early onset. I was only 36 yrs old with a cag of 42. Part of me for years hoped they all were wrong. But unfortunately my chorea's stated in 2019 in my face and feet/mainly my toes crunch alot, botox has help greatly with this." The other symptoms play a large role in their ability of everyday life and tasks. This in turn impacts job performance and puts them at risk to lose their livelihood, sometime suddenly if the patient is also stubborn to be medically seen (which seems to be another symptom) My mom was diagnosed by our doctor and two years later I started to see things change in me like my emotions and depression. I have a hard time thinking and concentrating and my job is noticing things but my boss understands. I want the test and I want the HD diagnosis because I can tell I know myself and if it is HD I want to find out. Thank you. We waited for the Center of Excellence to diagnose my husband because he lost his job and was not behaving right his depression and memory was getting worse but he had no movements. We went to our private doctor and she finally helped us with an HD diagnosis. It was so hard this process.

No he recibido un diagnóstico pero no puedo trabajar debido a problemas de memoria y depresión. (I have not received a diagnosis but I cannot work because of memory problems and depression)

La E.H. es complicada y considero que los médicos deben basarse en otros datos para determinar u diagnóstico, por ej. historia familiar, prueba molécular (HD is complicated and I believe that doctors should rely on other data to determine a diagnosis, e.g. family history, molecule test.)

not right we must have change to help us here in the US

I thank my neurologist at the center in WA he worked with me. I have none of the movements but he understood my issues and now I have ssi and waiting for medicare

My depression and anxiety is horrible and I have a hard time at work but need money. The doctors won't diagnose me or let me take the test and its not fair.

When my husband was alive we waited four years before they finally provided a diagnosis. He never had movements and lost his job and it was all memory and behavioral issues.

I hate that they don’t care enough about us to make the changes we need

In the usa we need this diagnosis because we don’t have medical insurance to help us I can’t afford any of the doctors

I was told by my neurologist that I was over weight and it was impossible for me to have HD even though I showed him that my cag was 44 and I got the test done by my personal doctor. I tried to tell him that I had serious issues with depression and anxiety and I struggle with alchol and suicide thoughtsI lost my job 2 months later. I am so angry about all of this crap.

It is not about me needing to know if I have the gene or HD but I want to know and the center of excellence won’t give me the test!

this needs to be changed real fast so many on facebook are crying out for help but no one cares

Many in my family just gave up on getting a test bc we get turned away my dad had it and the neuro doc knows this but will not see us

I was on facebook and told people in the private group that my son’s HD test came back normal. People were asking about his cag number and I told them 39 and many were vocal about this. The doctor told us that he was going to be fine and he and his wife were planning a family but now with all of the comments from FB it concerns us.

My husband never had movements but began to be mean and hateful. I know this isn’t him but the HD but he is aggressive. We finally got the gene test and he’s 40 cag. My three sons are at risk and they all want to get the test done but they don’t show any physical signs. It all been mental and emotional for us since his dad was alive.

Why are people saying that a CAG of 38 is fine and I can have children? Please help me understand!

People should know if they are carrying the gene if they want to so they can plan their future. We talked about your survey in our group and almost every person agrees that things need to change for us.

I was turned away again from my HD center because I have no chorea but I keep telling them that my job is on the line and I am struggling to keep it together at work. I talk to my boss about it and her hands are tied. She understands what’s going on with me but sometimes I just can’t get to work on time or I forget so many things.

My son has a CAG of 37 and he has been clumsy for the past year and his walking has gotten worse. He has tapping movements with his foot and he moves his fingers throughout the day. My family thanks our current doctor for finally listening to us and getting us help.

Everything I’m taking for depression and my anxiety is coming out of my pocket until I get my diagnosis for Medicare. This is just wrong!

My neuro doc said that my CAG is 40 and I don’t need to worry so much because my mom has chorea and I’m not getting it yet. Is this right? I go to him and he knows my depression and other things with my wife are not right. Am I alone in this? I have to wait for the chorea before my diagnosis of HD???

My daughter was told she couldn't test until she got a sign off from mental health so she didn't get tested until several years later. In the meantime, she suffered severally and received several misdiagnosis. She could have gotten help sooner. This needs to be changed!

Please do more to help people fight this disease

I have lost too many family members to this disease who were not only punished by the cruelty of the disease itself, but further punished by the delays in assistance caused by the misunderstanding of its actual onset. The devastation of HD begins LONG before motor symptoms show even the most subtle signs. It is imperative that diagnostic criteria be updated to include the life altering EARLY changes of behavior, cognition, psychiatric stability and functional skills.

It is extremely important that the cognitive, psychiatric and behavourial symptoms be tken in consideration for a diagnosis of HD. These symptms frequently begin long before the chorea and can cause the person serious problems with their families, job and friends.

HD´s wife and caregiver. Albert just passed away 2 weeks ago after 20 years. He was an extraordinary man with a cruel disease. I integrate APAEH who is the Huntington Association in Argentina. A very little, just 4/5 families with no income and structure but full of love for HD patients and caregivers.

Huntington’s patients need much more support, and they need it earlier. They and their families should not have to fight for financial and care support. This begins with earlier diagnosis. We need easier access to respite. Because HD is rare, it can be overlooked, but it is devastating for families.

I’m wishing that I was Diagnosed sooner because if I am now going into Huntington’s Chorea and I thought that I would not get to this Stage yet.

Please make it so other Patients Will Be Diagnosed Sooner even if they are already showing signs of other Patients sho Depression Please Help Them!!

HD plays havoc on both the patient and the family caregivers. Besides one being tested for HD, the fact that a family member who passed with HD or one who is in late stages of HD should be proof for one to gain support. Although there are many who may not know family genetics often causes difficulty for one learning about this disease. Move forward to help those in need as asking for help puts a burden on those seeking help or assistance.