Receiving a rare disease diagnosis can be devastating. HOD comes with a wide array of symptoms and varying degrees of severity. Some of us have lost the ability to walk and talk. Some have very few symptoms. None of us really know what the future holds or what to expect. The only medical guidance we get is symptom management. There are currently no treatments for HOD. Let’s share our stories and help drive change! This is an exceptional community of brave folks who are just trying to live their lives every day, with some days being great and some days being not so great. For me, some days I can walk unassisted, some days I need a cane, and some days I use a rollator or walker. I never know what I will get until I wake up that day. This doesn’t have to be devastating!

Although our stories will evolve over time, it is important that we share them! It helps science and industry to understand why this disease is devastating. Our stories give those that can help us a great foundation and an answer to why they should invest in our disease. Our lives don’t need to be tragedies. We can share our new perspectives and share wisdom from the other side of a diagnosis. It’s important to share a full picture, not just the hard parts. Together, we can make a difference in this rare disease existence. Help us to create solutions to this very rare problem!