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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.org.

*In the survey, "other symptoms" pertain to depression, anxiety, behavioral issues, mood swings, physical abuse, social issues, alcohol/drug issues, suicidal thoughts/actions, apathy, sexual promiscuity, inability to hold employment/problems at work, etc.* 

Our Report: 

 

  • Distribution of Survey:

The survey was shared via social media platforms (Facebook, Twitter, LinkedIn, Instagram), WeHaveAFace Global Times (electronic newspaper), WeHaveAFace TV, and WeHaveAFace global email database. 

 

  • Participation in Survey:

1,485 patients/caregivers completed the anonymous survey 

 

  • Global Locations:

USA, Canada, Mexico, England, Scotland, Ireland, Germany, Finland, Australia 

 

  • Data reported from the following survey questions:

- “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 from 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?” 

 

  • Outcome:

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. 

Our Recommendations:

WeHaveAFace.org is working diligently with an international team of medical professionals and lay organizations to make the necessary changes to the current diagnostic criteria for Huntington's disease.

The global HD community has spoken and change will come!

Watch this space!

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Survey Questions and Results:

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Survey Comments:

**Each of the following comments below are reported exactly as they were provided within the survey. This is a short list of comments from the Huntington’s community.**

 

  • Since I didn't know of HD in my family my early coordination and balance were attributed to my seizure control medication.

 

  • 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

  • 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

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  • 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???

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