Three months after my Leber’s hereditary optic neuropathy (LHON) diagnosis, I chose to attend the LHON part of the United Mitochondrial Disease Foundation (UMDF) Symposium. I wanted to absorb as much new information about a rare disease that I knew very little about.
I also wanted to meet other people out there that have been living with this disease for years, to hear the challenges they may have faced, and the tips and tricks they discovered so I could best prepare myself and adapt as quickly and efficiently as possible.
Conferences are for networking, meeting new people, learning and asking questions. It’s a mix of hearing others’ stories and sharing yours so others can learn from you as well.
They can be overwhelming. But I have found that going in with 3-4 goals helps me prepare—making conferences feel more manageable. These goals can be anything from finding one local person you can stay in touch with to finding a local event or community group to discovering an activity that helps make challenges easier.
Consider asking a friend, family member or coworker to attend with you. It will be a great learning experience for them, and it is always easier to network alongside someone else. Together, you can figure out what information you want to follow up on or implement into your lives.
For example, after my first conference, I recapped with my wife Alison about our key takeaways. We agreed to take advantage of all the positive information and new research we heard about and apply these learnings in our lives, such as new technology applications, activities and sports in the community and new clinical trial research. We also realized we wanted to proactively limit stress, depression and frustrations in our daily lives.
Meeting new people is exciting – especially when you know you have something in common. I try to keep an open mind and remind myself to talk to as many people as possible. You never know who will be a long lasting relationship or may introduce you to someone that has similar questions or challenges.
As I listen to others and their stories, I remind myself to be kind, understanding and try to positively impact their lives. Of course, you will also hear some negative takeaways or perspectives, but being able to learn from their experiences and still have a positive impact is just as important.
Remember, you and everyone else are attending this conference for a reason — to make your lives better and meet other people that are going through the same thing.
Conferences are only as good as you make them, so have fun, meet people and try to apply what you learn to daily actions in your life!
Inherited Mitochondrial Disorders: A Family Diagnosis
Mitochondrial disease is genetic, meaning that often families get diagnosed simultaneously. Susan recalls the complex diagnosis journey that she and her son embarked upon to get answers.Read Susan's Story