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Newly Diagnosed

Overview

If you, or a loved one, have recently been diagnosed with Huntington’s disease (HD) you may not know where to begin. Learning your diagnosis may have been the first time you heard of HD, or you may have been living with family members with HD your whole life. Either way, you’re probably feeling overwhelmed, a little scared, and possibly relief in finally knowing what is causing the strange symptoms that you and other members of your family have. 

HD may be rare, but you are not alone. HD Reach is here to help and there are experts throughout the country and researchers around the world who are working to give you the knowledge and treatments for living well with HD. Contact HD Reach for help in finding a medical team to help you treat your symptoms or the symptoms of someone you love. 

Treating HD involves more than treating symptoms. You have other concerns and practical matters that need to be thought through. Everyone is different and arriving at this moment at a different time in their life. All of the topics on this list won’t apply to you now or possibly ever. If you need help with any of these issues, please contact HD Reach or someone else you trust. 

Family Communication 

  • How to tell other members of your family. Especially if this news will impact their risk of having HD. 
  • How to tell your children. 
  • How to talk to your children about their HD risk status. 

Navigating work 

  • When should you tell your employer? 
  • Workplace accommodations. 
  • Applying for disability.  

Financial Planning 

  • Affording healthcare expenses 
  • Affording long-term care 

Healthcare 

  • Who should be on your healthcare team? How to find them. 

Legal 

  • Advance Directives 
  • Wills and estate plans 

You’re not alone. HD Reach is with you. We can help you every step of the way. If you have HD or care about someone with HD, HD Reach is a free resource made available by community support because we know this journey is hard, but walking it together makes it easier. 

Connecting with others is one of the best ways help you feel confident and in control of your health. Check out the following options: 

  • Month Meet-Ups – open to anyone impacted by HD 
  • Quarterly Caregiver Groups – open only to care partners 
  • Couples Workshop – for newly diagnosed, pre-symptomatic people and their care partner.  
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