Project CHANGE Results
Petitions signed by country:
USA, Australia, France, Finland, Sweden, Netherlands, New Zealand, Canada, Belgium, Germany, Mexico, Argentina, Greece, Italy, Spain, Chile, Brazil.
*Total completed petitions and countries updated weekly.*
*Privacy: Petition did not require patients/families to complete all fields.*
Comments via Petition - Verbatim
"For years we have been hoping for this. Whoever 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."
"We are fighting with people who say they are here for us? What is wrong with them and why can't they listen to us?? Change the criteria so my kids can get what they need here!"
"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"
"I have problems at work and my neurologist and the social worker wont give me the diagnosis right now I have to wait. I will lose it all I know it."
"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 with low CAG-repeats even never."
"Do they really care? This is not right and people are getting HD warrior wings when they didn't have to and could have lived longer."
"Large family with HD. Nieces and nephews starting to show symptoms."
"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 family!"
"I am caregiver for my husband has Huntington Disease for 5 years. Thank you for putting this together. CHANGE IT!"
"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 unexceptable 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."
"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."
"All huntingtons patient's need help and support, even at the early behavioral an emotional stages. This is NECESSARY!"
"This Petition is Important for People to have the Right of A prompt and efficient Correct Diagnosis"
"To many times we are turned away because no chorea is in the family. We are tired of this and its killing us!"
**Many more comments will be posted in the next update**