LHON is rare, so each individual affected tends to be isolated and struggles to find the information they need to adjust to their sudden vision loss. LHON Facebook groups connect people around the world, sharing important information and empowering them with the information they need to move forward. There is a large, global Facebook group with over 5,000 people around the world who are affected by LHON, carriers, loved ones, and others interested in LHON. It's the best place to share information, ask questions, and be involved with the global LHON community - just click the Facebook logo below to join the conversation.
In addition, there are support groups and Facebook groups that can be helpful for people in various countries whose lives have been impacted by LHON.
In the US, there are Facebook groups specifically for people living in various states or regions where people can share information about local events of interest, request referrals to LHON specialists, join regional Zoom events and make valuable connections.
There is also a Facebook group specifically for discussions about non-ocular symptoms that might be related to LHON, and a group specifically for those with both LHON and MS:
LHON-MS Facebook group
There are Facebook groups specifically for discussions about various topics:
There are Facebook groups based on your connection with LHON:
LHON Affected Women
2. Monthly Phone Calls
On the first Wednesday of each month, at 8 pm Eastern / 5 pm Pacific, there is a conference call where anyone interested in LHON is invited to call in and connect with others in the LHON community. Here’s how to join the call with One Click dialing if you're in the US, Canada or Australia (note these are not Toll Free numbers):
For callers in other countries, use this Meeting ID: 347 809 922, and find your local number at this link:
To avoid toll charges you can use Internet Audio and call in at the link below, and use the Meeting ID: 347 809 922:
The first hour is recorded so those who missed the live event can hear the speaker and subsequent conversation. Then the recording is ended so callers can speak freely and ask any questions they might not wish to have recorded, with a group of "LHON veterans" ready to provide insight and experience. To listen to recorded calls, click on the LHON Live logo above to go to the LHON page on the UMDF website, scroll down and click on the link to the call you want to hear. To receive email notifications of upcoming calls, click the "Register" button above and provide your email address.
In addition, on the third Thursday of each month, there is a call just for Dads of "Kids of Any Age" Affected by LHON at the same time as the LHONLive! call, and at the same numbers. All dads who have a "Kid of Any Age" affected by LHON are invited to call.
3. LHON Conferences
The eighth annual LHON Conference will take place in June 25-26, 2021 in Charlotte, NC. For details, visit the Conference tab above. To view videos from prior LHON Conferences, visit this link:
4. LHON Journey Videos
For each individual whose life is impacted by LHON, their LHON journey is individual and different. At the LHON Conferences, many people have shared their unique LHON journeys.
5. Global LHON Community Updates
Annual updates on the developing global LHON community have taken place at the LHON Conferences each June.
6. LHON in the News
Many individuals affected by LHON have been featured in the news, such as in the TV show and articles below.
7. Books and Movie About LHON
Sweden's LHON Eye Society created a book about LHON called "Look Forward." Here's a link to the English version in a .pdf format.
Born With A Bomb is a collection of stories about living with LHON.
Kevin Coughlin shares his story of losing then regaining vision.
Steph Cutler in the UK wrote this book about her first decade of living with LHON.
Jared Hara, now an accomplished musician, and his family shared the poignant story of becoming affected by LHON in this documentary called Blindsided.
8. “Welcome to Holland”
Learning that you or a loved one is affected by LHON requires a significant emotional adjustment. You’re joining a new community of people affected by vision impairment and a genetic disorder; probably not the community you had been a part of before, and not one you would have chosen to be a part of, yet a welcoming and helpful group of people. You can still remain involved in the world of the fully-sighted, but you’re also now part of a new and different community. Those who have made the adjustment before you tend to be very willing to help you through the process of making that adjustment, the emotions of which are captured nicely in the following story:
Welcome to Holland - by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.