This website should be considered general information only and should not be considered medical guidance or professional advice.  Always direct any questions concerning your personal health to your doctor or another appropriate health care professional

 

LHON COMMUNITY

1.  Facebook

 

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 4,000 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. 

 

Argentina

   Argentina Facebook group

 

Austria

    Germany, Austria, Switzerland Facebook group

Australia

    Australia Facebook group

    Australian Mitochondrial Disease Foundation (AMDF)

Brazil

     Brazil Facebook group

Canada

     LHON Canada 

     Canada Facebook group

 

Denmark

     Denmark Facebook group

 

Finland

   Finnish Federation of the Visually Impaired (FFVI)

   Finland Facebook group

France

   Ouvrir les Yeux
   France Facebook group

Germany

   Leben mit LHON Facebook group

   Germany, Austria, Switzerland Facebook group

   

Italy

   Mitocon

   Italy Facebook group

 

Japan

   Japan LHON Support group

 

Latin America

   Latin America Facebook group

Netherlands

   Netherlands Blind Support organization

   Netherlands Blind Support organization LHON Facebook group

Philippines

   Philippines Facebook group

Portugal

   Portugal Facebook group

Spain

   ASANOL-Spain's LHON organization

   Spain Facebook group

Sweden 

   LHON Eye Society
   Sweden Facebook group

 

Switzerland

    Germany, Austria, Switzerland Facebook group

 

Turkey

    Turkey Facebook group

 

UK

   LHON Society
   LHON Society Facebook group

   Scotland Facebook group

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, and make valuable connections.  

     New England

     New York

     New Jersey

     Pennsylvania

     DC/MD/VA

     The Carolinas

     Georgia

     Florida

     Michigan, Wisconsin, Minnesota, Iowa

     Ohio

     Illinois and Indiana

     Kentucky and West Virginia

     Tennessee

     Kansas and Missouri

     Arkansas

     Alabama, Mississippi and Louisiana

     Texas and Oklahoma

     Pacific Northwest

     California

     Southwest

There is also a Facebook group specifically for discussions about non-ocular symptoms that might be related to LHON:

     LHON Plus Facebook group

And there is a Facebook group specifically for discussions about Navigating Education with LHON, for students, parents of students, teachers, school administrators - anyone involved with academics and with LHON.

     Navigating Education/School with LHON

 

There is also a Facebook group just for Moms of Kids of Any Age Affected by LHON:
     Moms of LHON-Affected "Kids of All Ages"

And a similar group just for Dads of Kids of Any Age Affected by LHON:     

     Dads of LHON-Affected "Kids of All Ages"

If you would like help starting a support group in your country or state/region, or on a specific topic, please contact LHONpoince@aol.com.

 

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):

US:  +16699006833,,347809922#

Canada:  +16475580588,,347809922#

Australia:   +61280152088,,347809922#

For callers in other countries, use this Meeting ID: 347 809 922, and find your local number at this link:
https://zoom.us/u/aYbvpoNU9 

To avoid toll charges you can use Internet Audio and call in at the link below, and use the Meeting ID: 347 809 9222:

     https://zoom.us/j/507753137

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 sixth annual LHON Conference will take place in June, 2018 in Nashville, TN.  For details, visit the Conference tab above.  To view videos from prior LHON Conferences, visit this link:

   LHON Conference Videos

 

 

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.

2017

2015

2016

2014

 

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.

Jeremy Poincenot - ABC 20/20

Joe McCormick - Boston Globe

Chaz Davis - Runners World

Jared Hara - Attitude is Everything

Tucker Dupree - Men's Journal

Mark DeMontis - Toronto Star

Adrian Broca - Runners World

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.

Look Forward

Born With A Bomb is a collection of stories about living with LHON.

Born With A Bomb

Kevin Coughlin shares his story of losing then regaining vision.
Unblinded

Steph Cutler in the UK wrote this book about her first decade of living with LHON.

Living With More Vision and Less Sight

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.

 
 
 
 
 
 
 

2017