Jeremy    Age at Onset - 19    Year of Onset - 2008    LHON mutation - 11778   jeremypoincenot.com

2.  Meet People with LHON

During my second year of college I woke up one fall morning and noticed things seemed blurry.  I saw an optometrist in San Diego the day before Thanksgiving and when I covered my left eye, I was shocked that I couldn’t see the eye chart at all.  To rule out a brain tumor I had an MRI, then the neurologist treated me for optic neuritis, next for neuromyelitis optica (NMO).  Finally we saw a neuro-ophthalmologist at UCLA who made the tentative diagnosis of LHON which was confirmed 3 1/2 weeks later when the genetic report of 11778 was received.  I hope that one day my vision will return, but until then I am determined to live my life as normally as possible.

My vision started getting blurry so I went to the optometrist for glasses or contacts.  He sent me to two specialists who diagnosed LHON 11778.  Since I was adopted at birth, I was inspired to travel from my home in New England to find my biological family in Costa Rica where I was born.  I had always considered myself an only child, but was surprised to learn I have 3 brothers and 1 sister.

I’m adjusting to college life as a legally blind student and am re-learning how to attend classes, study and take tests.  I live in my fraternity house where my ‘seeing eye brothers’ have helped me adapt by treating me as normally as possible.

We created a fundraiser for LHON research called Cycling Under Reduced Eyesight (C.U.R.E.) www.lhon.org/cure, and will ride each summer until a cure is found.  I give speeches to raise awareness of blindness and LHON.  I keep very  busy – since I lost my vision I’ve taken up surfing, painting, skydiving, running and blind golf.  I’ve found that it’s easier to live with LHON vision when I stay very busy.

Jonathan    Age at Onset - 20    Year of Onset - 2003    LHON mutation - 11778

I realize my good fortune to be living in America, for if I had stayed in Costa Rica with my extremely poor biological family I would have probably been handed a cane and most likely never left the house.  Instead I am pursuing a Ph.D. in Counseling Psychology and I lead a very active life.  It is ironic that of all five siblings I am the only one to be legally blind and the only one to be given up for adoption.  It has not been easy waking up to vision loss every single morning, but it does get more routine with time. 

I noticed a blurry spot in my vision shortly after starting my first  semester of college.  My optometrist suspected irritation from contact lenses or optic neuritis.  He advised me to switch to glasses immediately and come in for an examination.  After a battery of tests, he sent me to an optic nerve specialist.  Another battery of tests with  the specialists confirmed LHON.

I was enrolled in the College of Forestry.  I withdrew for a semester to adjust.  I had to learn a completely different way of studying from all of my friends.  All that time spent not studying in high school finally paid off, as I did not have as many study habits to unlearn as my high school teachers would have liked.

Blindness is something I have never “gotten used to.”  It is something I have learned to live with.  I continued with college and graduated with a Natural Resources degree from the College of Forestry.

Locke    Age at Onset - 18 years, 10 months    Year of Onset - 1993    LHON mutation - 3460

In high school I played football and basketball and was very involved in clubs.  On December 15, 2008, I came home from basketball practice and was studying for final exams. I took a study break and while drinking a glass of milk looked to the left at the TV. It was completely blurry so I figured I was tired from studying or dehydrated. The next day I woke up and told my parents and they thought I needed glasses.

I visited an optometrist who thought it could be macular degeneration, or

fluid blocking my retina. The next week I went to a retinal specialist for more

tests and pictures.  He thought it was MS and optic neuritis. I then had an MRI

on Christmas Eve. I went to Loyola Hospital in Chicago several times to

neurologists and neuro-opthalmologists for tests and bloodwork. Finally, on February 20, 2009 I was diagnosed with LHON at the University of Iowa.

LHON has truly affected my life. I can no longer drive, read, recognize faces,

or play football and basketball. I have experienced stages of depression and emotions I

have never felt before. I go to the University of Florida and am majoring in

Health Science and plan to earn a doctorate degree in physical therapy.

This disease will not kill you and there will be a cure. People with LHON are

some of the best people and families I have met in my life. I hope to help out

as many people with LHON as possible along with other people with disabilities

because that that doesn't kill us, only makes us stronger.  Five fingers are

stronger together than apart so let's come together and fundraise to find a

cure.

Go Gators!

3.  LHON in the News

Many people with LHON have been featured in the media:

Tucker Dupree

Tucker Dupree's NPR interview

Radio interview with a swimmer competing in the Paralympics

http://thestory.org/archive/the_story_916_Tucker_Dupree.mp3/view

Mark Demontis

Journey of Hope

Article on a Canadian hockey player/skater raising money to support youth hockey

http://www.torontosun.com/news/torontoandgta/2009/06/08/9709626-sun.html

Jeremy Poincenot

Blindness Won’t Be His Handicap

Article on a golfer striving to become the best blind golfer in the world 

http://www3.signonsandiego.com/stories/2009/oct/27/blindness-wont-be-his-handicap/?uniontrib

Moving Forward

Article on a San Diegan with LHON competing in his first running event

http://www.nctimes.com/sports/community/article_eca9ef2a-7fcf-5304-a7bd-0def911018e0.html

Mike Scholes

Website of an adventurer riding a hot air balloon at the North Pole

http://www.mikescholes.dreamhosters.com/northpole2010/

4. 4. “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.

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

I often wondered how I was going to do any type of purposeful work that I enjoyed.  Technology advanced quickly in the 1990’s and 2000’s.  It has opened a world of accessibility.  I recently went back to school and obtained a joint law degree and masters of business administration.

“Endeavor to persevere.” 

Chief Lone Watie - The Outlaw Josey Wales

Cameron     Age at Onset - 18 years     Year of Onset - 2008     LHON mutation - 11778