LIVING WITH LHON

 
  1. 1. Emotions

  2. 2. Mobility

  3. 3. Assistive Technology, Reading & Films

  4. 4. Social Security

  5. 5. Rehabilitation

  6. 6. School/College

  7. 7. Careers

  8. 8. Activities/Sports

  9. 9. Explaining LHON

  10. 10.  Resources

  11. 11.  Genealogy

  12. 12.  Vision Tests

  13. 13.  Lifestyle Choices

  14. 14.  UK-specific Information


1. Emotions


Everything about LHON is emotion-laden, both for the patient and for family members.  Speaking with a counselor can be helpful in talking through the grief, fear and anxiety the sudden loss of vision can produce.  The patient and family members can all benefit from finding a counselor with experience supporting people dealing with vision loss.  These specialists can often be found at non-profit organizations devoted to supporting people with blindness.


Adjusting to LHON vision loss can lead to lots of crying, and feelings of depression.  It’s normal, but it’s important to make sure it doesn’t get too intense.   Many other families with blindness have a very different sequence of emotional adjustment.  Often blindness occurs in babies, so the parents can deal with their shock before the child is aware.  With LHON, both the patient and their family members must deal with shock and grief all at the same time, while striving to stay positive for the others.  


One of the major challenges of LHON is coping with loss. Losing the ability to drive, which means losing some of one’s independence.  Losing the ability to see and recognize faces.  Losing the ability to read standard text.  Coping with loss involves grieving…mourning what’s been lost and adapting to what remains.


An aspect of LHON that can create additional emotional distress is the possibility of spontaneous recovery.  The odds of spontaneous recovery differ based upon the specific mutation you have. The good news is that there is always hope that you will be one of the lucky ones whose vision improves at some point in time.  The bad news is that this hope can make it difficult to fully adapt to the vision loss, hoping that you’ll return to “normal.”  If your vision does not improve after a year or more of waiting, then you may experience the depression and sadness of the initial vision loss all over again.  Striking a balance between acceptance of vision loss and hope for vision recovery is an ongoing challenge of LHON.


Keeping a positive attitude is one of the most important aspects of dealing with LHON.  It’s easy to give in to sadness from the vision loss, but it is quite possible to live a full and meaningful life with LHON vision.  That doesn’t mean it’s easy.  Some with LHON vision wake up each day and curse the fact that their vision isn’t normal, then they just get on with it, and make that day the best it can be.  Others eventually embrace their new lives as visually impaired, and enjoy the awareness that comes with recognizing that life’s obstacles can be overcome.


Since the LHON gene is passed maternally, some mothers feel a sense of responsibility for their child’s vision loss.  Yet like all genes there’s nothing that can be done about it so it’s helpful to focus on all the good genes that were passed to your children that will help them cope with this disorder, rather than to dwell on the negative.



Connecting with others who have lost vision and who are leading rich, productive lives can help with the adjustment to LHON vision.  Since LHON is rare it’s difficult to find others living nearby with the condition.  One approach is to click on the Register tab at the top of this page and ask to be connected with local LHON families.  Joining the LHON Facebook group offers lots of information and support.  Other possibliities are to connect with people with other vision disorders such as Retinitis Pigmentosis (RP) or Stargardt’s which are more common than LHON and are similar in that vision is lost at a relatively comparable age.  However these conditions are different in that they are progressive.  This gives the patient a longer timeframe to adapt to the vision loss, but creates a dimension of perpetual fear since those patients are always aware their vision will get worse, compared with LHON where the vision loss is rapid and profound.


The American Foundation for the Blind (AFB) has an excellent resource called FamilyConnect, for parents of children with visual impairments.  Several articles on the emotional impact of learning that your child is visually impaired are at: 

     www.familyconnect.org/parentsite.asp?SectionID=80&TopicID=370


The Hadley School for the Blind offers free correspondence courses for people with vision loss and their families.  You communicate with a teacher as needed toll-free or via email.  They have courses such as “Self-Esteem and Adjustment to Vision Loss.”

     www.hadley.edu



2.  Mobility


When vision is lost, it’s natural to wonder how you’ll get around.  Most with LHON vision retain their peripheral vision, which gives enough sight to walk around without seeming to be blind.  Since there’s no visible symbol of the vision loss, others may not react appropriately.  Some with LHON vision carry a white cane which helps make clear there’s vision loss; some use a guide dog.  Often, the local blind services organization or state rehabilitation program offers Orientation & Mobility (O&M) training which includes how to cross the street safely and how to access public transportation.


Since driving is not an option with LHON vision, it’s helpful to live in an area where services can be easily accessed without a car.  Locations can be assessed at this website:

  www.walkscore.com




3.  Assistive Technology, Reading & Films


There is an extensive variety of assistive technology available for people with low vision, and the options continue to increase.  With adequate magnification, such as with a CCTV, the remaining peripheral vision can allow those with LHON vision to read.  Talking cell phones, and computer software such as ZoomText, Kurzweil and JAWS, as well as the built-in accessibility features of Apple products, are used by many with LHON.


                                          


Most insurance companies do not cover such equipment.  Some Flexible Spending Accounts do cover such assistive technology.  If you’re an adult and you work with your state’s Dept. of Rehabilitation, they may purchase some of this equipment as part of the “rehabilitation” process.  It takes time to go through that process.  If the vision loss occurs under age 18 then the parents’ income is considered when determining need.  Some agencies such as Lighthouse or The Braille Institute will loan equipment while awaiting the Dept. of Rehabilitation.  Students in school may be provided access to the technology needed to succeed in school and for college students there might be a student disability center with the required equipment available for use.  Community groups such as the Lions Club may offer grants.  The National Federation of the Blind (NFB) offers a technology loan program with a low interest rate, and the Association of Blind Citizens (ABC) offers an assistive technology fund at:
     http://blindcitizens.org/assistive_tech.htm

Sometimes family and friends wish to donate money to help purchase needed equipment.  One way to do so online is via the program called GiveForward:

    www.GiveForward.com


Another way to read is to access books in a digital format.  Several services exist for free access to electronic books simply by filling out a form signed by a medical professional confirming that the applicant is legally blind.  Special MP3 players with DAISY format may be required to access these materials.  Sources include:

    www.LearningAlly.org

    www.bookshare.org

    www.braillelibrary.org

Note that LearningAlly was formerly called RFB&D.  Much of the material offered by the free sources noted above has been recorded by volunteers so the quality of the readings is varied.  Other options may be more expensive but may have professional readers for a higher performance quality.  These books may be downloaded to more common MP3 players such as an iPod.  Sources include:

    www.bn.com


Going to the movies and watching DVD’s and TV becomes a challenge, as much of the detail cannot be seen with LHON vision.  Descriptive video provides the information that a vision impaired person cannot gather when watching a film or TV.  To learn more about movie theaters that offer descriptive video and to watch an example, visit this site:

     ncam.wgbh.org

For a list of TV shows with audio description available:

     http://main.wgbh.org/wgbh/pages/mag/services/description/ontv/

On online resource to find descriptive videos has both closed captioning (CC) and descriptive video (DV), so ignore the CC listings and select descriptive video in the drop down menu.  Call the theater in advance to ensure it’s available for all theaters and all showings, and ask how early to arrive since the equipment is only rarely used so it may take a while to get it set up properly.  Be sure they don’t set the audio to hearing impaired.

     http://www.captionfish.com

For free mp3 downloads of audio described movies, check out:

     www.blindmicemart.com/assets/product_images/movies2.html

    

One way of keeping up with the news is through the newsline service from NFB.  This free service provides audio access to over 300 newspapers and magazines.

     www.nfb.org/nfb/Newspapers_by_Phone.asp


Disneyworld offers wireless headsets that provide recorded narratives throughout the park.



4.  Social Security


Once vision in both eyes is 20/200 or worse, it’s possible to apply for Social Security benefits depending upon income and assets, work history, etc.   To get information about how Social Security works for those who are legally blind, check out this site:

  www.ssa.gov/pubs/10052.html


Setting up an appointment as soon as you are legally blind protects your benefits from the time the appointment is made.  By reading the information and preparing information in advance, the process will go more quickly, though not all will qualify for benefits.



5.  Rehabilitation


If the person with LHON vision loss is an adult, it’s worthwhile to contact your state’s Department of Rehabilitation to learn what they can do to assist in the adjustment to vision loss.  A counselor specializing in blind clients will probably need all the same information provided to the Social Security Department—evidence of blindness, medical records, etc.  Their process requires forms and meetings.  It may be helpful to find a counselor who lost their vision as an adult, which gave us exposure to another adult with vision loss as well as to the rehab process.


The counselor may refer the patient to a low vision specialist (and pay for the visit).  That specialist will assess low vision needs and make recommendations for items required for success in rehabilitation such as binocular glasses or a monocular telescope.  There may be a separate appointment with a representative from a company that makes high tech aids such as a CCTV, etc.  Once all the paperwork is complete, the client and the counselor agree on a “plan” whereby the state will pay for items required to get the blind person to their goal of working.  This can include all the required assistive technology and, if appropriate, college tuition, books and supplies.

   http://discoveryeye.org/blog/low-vision-what-to-do-when-theres-nothing-more-that-can-be-done/




6.  School/College


Since the typical age of onset is around 15-25, a large percentage of those affected by LHON vision loss are in high school or college.  For those in high school, there is usually a vision specialist associated with the school or the school district who can support the student in the transition from fully-sighted to vision-impaired.  For those in college there is usually a Student Disabilities Center that can help with absence notification to professors at the time of vision loss and provide access to assistive technology, a notetaker, testing accommodations such as extra time and a reader, etc.  However, since most students with vision impairments have had them since they were children and have been trained in living with vision loss before arriving at college, these centers may not be structured to provide a simple path for the transition from fully sighted to significantly vision impaired.  These services may be found in the community at a Lighthouse, Center for the Blind and Vision Impaired, or similar organization.


To learn more about the government’s responsibility to educate children with disabilities consider this FAQ document:

     www.ed.gov/about/offices/list/ocr/504faq.html


For students heading off to college, here are some tips:

     www.pacer.org/parent/php/PHP-c170.pdf


There are many scholarships available to students who are visually impaired.  

     www.nfb.org/nfb/scholarship_program.asp

     www.collegescholarships.org/scholarships/blind.htm

      www.bellaonline.com/articles/art28386.asp

      www.jgb.org/guildscholar.asp

      www.freeeducationguide.com/?Campaign_ID=5220&PID=CD15695

      www.disabilityscholarships.us/disability-scholarships/unknown-blind-disability-christian-scholarship/289/

      www.afb.org/Section.asp?Documentid=2962

      www.nfbcal.org/cabs/resources/scholarships.php

      http://blindcitizens.org/abc_scholarship.htm

     https://www.learningally.org/about-learning-ally/awards/

     http://www.onlineschools.org/financial-aid/disabilities/



7.  Careers


Some affected by LHON are already in a career, and need to figure out how to overcome their vision loss to continue with their career.  Others wonder what career could they possibly do with LHON vision.  Some ideas about careers and blindness can be found on this site:

     www.afb.org/Section.asp?SectionID=7


Information about the rights of employees with a disability, including legal blindness, can be found at:

     www.visionaware.org/what_is_the_americans_with_disabilities_act



8.  Activities/Sports


It’s important to find sports and activities that can be done successfully with LHON vision.  The USABA supports vision impaired athletes:

     www.usaba.org/Pages/movie/usaba_video.html

Some sports to consider include:

     Tandem bike riding - back seat only!

        www.visionaware.org/how_can_i_cycle_if_i_cant_drive

         bicyclingblind.org/

         www.facebook.com/bicyclingblind

        www.blindstokersclub.org

     Skiing/snowboarding

        www.visionaware.org/id_like_to_continue_skiing_any_advice

        www.adacs.org

      Golf – the ball doesn’t move, which is good.

Find a “coach/caddy” who can assist with aim and finding the ball.

        www.blindgolf.com

    Swimming - here is a link to a very successful LHON swimmer: 

http://news14.com/content/sports/612380/despite-condition--local-swimmer-refuses-to-leave-pool/?RegionCookie=104

    Rowing - like tandem biking, the person in back doesn’t need good vision   

    Ping pong – can’t get hurt by the ball, and peripheral vision may suffice

    Tennis – find an opponent who hits the ball accurately and with consistent pace

    Basketball – bounce passes only, please! 

    Running and triathalons are also popular - often with a visual interpreter to help guide the route 

        www.facebook.com/groups/running.eyes

    Beep ball - a form of baseball, adapted for the visually impaired.

       www.nbba.org

And many others...people with LHON have successfully played football, soccer and other sports when their teammates and coaches have been willing to work with them.  For additional ideas check out:

        www.visionaware.org/sports_exercise

        http://www.seacoastnh.com/arts/book-of-the-week/encyclopedia-of-sports-and-recreation-for-the-blind/


To obtain equipment, training funds or funds to travel to competitions in these activities, consider contacting an organization such as Challenged Athletes Foundation and applying for a grant:

     www.challengedathletes.org/


Other activities include online games.  Resources include:

    www.audiogames.net

    www.allinplay.com


A travel pass provides discounted access to U.S. National Parks:

     http://store.usgs.gov/pass/access_pass_application.pdf





9.  Explaining LHON


There are many medical challenges people face that are immediately understood by the general public.  When the diagnosis is cancer or Alzheimer’s, for example, people generally have a sense of the situation.  LHON is different—most people you speak with will have no reason to know what LHON is.  They’ll never have heard of mitochondrial disease.  And most will have had no real contact with anyone who is legally blind.  Often blindness is perceived as an all-or-nothing condition, so those with LHON find themselves explaining again and again what they can and can’t see, and how they’ve lost central vision but can get around using peripheral vision.  Often times people know someone with macular degeneration, and while macular degeneration is a retinal disorder which tends to onset late in life unlike LHON which is an optic nerve disease which tends to onset in young adults, the impact on vision is similar in both cases.


People often ask if you can have an operation to “fix” the eyes, or to have an eye transplant.  It’s helpful to explain that there are 3 key aspects to vision:  the eyes, the brain, and the optic nerve.  With LHON the eyes and the brain work just fine.  What’s not working is the optic nerve which functions similarly to a wire that transmits information from the eye to the brain and back.  With LHON the cells in the optic nerve are overdoing it on apoptosis—preprogrammed cell death—too many cells are committing suicide, causing the optic nerve to atrophy.  It’s like a TV cord that’s been chewed by a mouse.  Since optic nerve cells can’t regenerate, the ‘cord’ can’t be fixed (though some with LHON are fortunate in that their optic nerve cells don’t die, they’re just sick, hence there can be spontaneous recovery in some cases).


Someone with LHON may not “look blind,” and if they don’t use a cane or a guide dog, people may not understand their problems.  When people walk by and the person with LHON vision “ignores them,” or doesn’t say hi back because they can’t see the person who said “hello”, it’s awkward for everyone.  Teaching friends to say “hi, this is so-and-so” upon approaching someone with LHON vision, and encouraging other friends ‘in the know’ to tell the LHON vision person when someone they know is approaching, can be a big help in overcoming this awkwardness.


Since those with LHON vision usually have some peripheral vision, they tend to use that peripheral vision to see.  They may look straight ahead so that others don’t find their gaze disconcerting, yet will look upward or to the side to really see.


  

         

Looking straight ahead

trying to appear fully sighted

 
                        

Truly looking straight ahead

using LHON vision

 

In social situations with strangers one cannot choose who to talk to, let alone make eye contact or ‘read’ another person’s facial expressions.  This can cause a sense of apprehension or unease in social situations and the more that friends can help out, the better.



10.  Resources


Most resources for the blind are for those who either became blind as children, or those who lose vision at a relatively advanced age.  The age at which LHON vision onsets is far different so the needs are different.  Those affected by LHON may feel that they don’t fit in at facilities for the blind since everyone else there are much younger or much older.  People who have gone through childhood without sight have a different sense of the world than those who were once fully sighted and lost vision as with LHON.   People who lose sight after completing school, college and careers are impacted differently than those losing vision as teens or young adults.


Parents with a child losing vision to LHON may find help from NAPVI’s message board:

    www.familyconnect.org/parentsitehome.asp

While most NAPVI parents have younger children, there is also some helpful information about teens.  Since the site is monitored and there is someone representing the organization who responds to questions, it can be a helpful resource.


Since LHON is a mitochondrial disorder, it can be helpful to learn more about mito disease at:

    www.umdf.org/

However, it’s important to keep in mind that LHON is very, very different from most mito diseases.  Most mito diseases onset in childhood.  Many affect several systems of the body at once, and generally not vision.  Some are life-shortening.  None of these descriptions match LHON, so those affected by LHON should be aware that their situation is quite different.  The information is helpful in that researchers studying mitochondrial disease are studying the same issues as for LHON,  but the same symptoms tend to be much, much different.



11.  Genealogy


LHON can be a good reason to delve into the family’s genealogy.  It can be interesting to trace the maternal line through all the women who carried and passed the LHON gene, and the men who carried but didn’t pass it on. 

Here’s a video by a woman whose brother was diagnosed, and how his being affected by LHON impacted her life.



























12.  Vision Tests


One of the most important tests taken by those with LHON is a Visual Field Test.  It tests where your eye can see and where it can’t.  Those with LHON tend to have what’s called a central scotoma; an area in the center of the visual field where no information is transmitted from the eye to the brain.


Another important test is an OCT (Optical Coherence Tomography).  This test measures the thickness of the optic nerve.  Generally the optic nerve is unusually thick at onset of vision loss, as the fibers are swollen.  Later the nerve becomes unusually thin, as the fibers atrophy.



13.  Lifestyle Choices


For people with LHON vision loss and for those carrying the LHON gene but not affected, there is usually a concern about what choices to make to increase the odds of spontaneous recovery and/or to reduce the odds of losing vision due to LHON.  Living as healthy a life as possible is usually recommended by medical professionals who understand LHON.  Most importantly, there has been research clearly linking smoking and smoke to LHON vision loss, including the following article:

    http://brain.oxfordjournals.org/cgi/content/abstract/awp158


14.  UK-specific Information


This section aims to provide specific information for those living in the UK. If you have any thoughts on how to improve it, please contact LHONpoince@aol.com or any of those listed below based in the UK.



Being Diagnosed

As this is such a rare condition most GP’s will not have heard of it and it will even be unknown to some eye doctors. You will need to get referred to your nearest eye hospital to speak to a consultant who is knowledgeable about LHON. At the eye hospital, if you have the symptoms of LHON they will take a blood sample to confirm this. Your blood will be sent away to be tested and this will take at least a month.  If it is confirmed that you do have LHON, you should speak to the consultant about any possible treatments.  You may wish to consider being seen at Newcastle University, where there is a team of researchers on the leading edge of LHON and mitochondrial disorders.  This team was deeply involved with the clinical trial of Idebenone, which is being evaluated by the EMA as a possible treatment for LHON.  While Idebenone cannot be prescribed in the UK, it can be purchased over the Internet.  Some patients have ordered the Kirkman’s brand from Glasgow Health Solutions;

https://healthyandessential.co.uk



Getting Registered

Once you have been diagnosed with LHON you should be registered either blind or partially sighted with your local council.  You should be registered by a local eye consultant, however it is voluntary.  Registering with your local council entitles you to practical help from social services, for example; Mobility training, independent living skills, etc.  Once you are registered you will also be entitled to benefits and concessions to help you to cope with life as a visually impaired person.  Benefits of becoming registered; http://www.rnib.org.uk/livingwithsightloss/registeringsightloss/Pages/registration_benefits.aspx

Or call the Royal National Institute for the Blind (RNIB) on their helpline;  0303 123 9999.



Living with LHON

Living with LHON may be difficult and it is different for each individual but hopefully you can get advice and support from many of the organizations that are out there.  Below is a list of websites/national charities that may be able  to help you adapt to life with LHON.  There are also many local charities that can also provide help and support but it would be difficult to list them all.  The national charities or your local social services will most likely be able to put you in touch with more local charities to your area. 


Royal National Institute for the Blind (RNIB) www.rnib.org.uk

The most comprehensive charity for visually impaired people. It is worth taking some time to look at all the services that they can provide. These include a talking book library, advice on all aspects of living with sight loss, a shop with all available technology and a helpline which is 030 123 9999.  Or you can email them on; helpline@rnib.org.uk


Action for Blind people - http://www.actionforblindpeople.org.uk/

Action for Blind People and The RNIB have joined forces to provide a better service for visually impaired people in the UK.  They can provide tailored support and advice for visually impaired people and their families. They give support for people adapting to a new life. They may be able to offer you advice on the benefits you should receive. These could include Disability Living Allowance, Working Tax Credit and Housing Benefit.  You can contact Action through the same contact details as the RNIB. 


Henshaws – society for blind people - http://www.henshaws.org.uk/

The charity is based in the north of England with centres in Manchester, Newcastle, Merseyside, Harrogate and knaresborough. They offer advice and training on many issues concerning sight loss.  Contact them on; 0161 872 1234 or email manchester@henshaws.org.uk


Royal National College for the Blind (RNC) www.rncb.ac.uk

A college providing further education for blind and partially sighted people in the UK.  This college has paved the way for visually impaired people to fulfill their ambitions in many sporting areas, such as blind football, blind cricket, and many more. 


Talking Newspaper Association (TNA) - http://www.tnauk.org.uk/


White Stick website - http://www.tnauk.org.uk/

A website designed to help visually impaired computer users locate information and services on the internet.


In Touch – Radio 4 every Tuesday 8pm

Radio programme about issues affecting visually impaired people


The Listening Eye

This is a telephone helpline that provides emotional support and advice for blind and visually impaired people.  The support is provided by blind and visually impaired people.  Lines open 6pm – 10pm Tuesday, Wednesday and Thursday. 

0800 783 1979. 


Sightline Vision North West

A telephone helpline providing emotional support and advice for blind and visually impaired people provided by blind and visually impaired people. Lines are open 6pm – 10pm, operates on the days when The Listening Eye is not available. 

0800 587 2252. 



Mobility

As someone with LHON you are entitled to a concessionary bus pass, which can be used nationally.  Please see - www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/PublicAndCommunityTransport/DG_4019388



You should contact your local public transport provider to see if you can use all transport with your concession pass. For example, in Manchester through GMPTE (transport authority in the area) you can get a concession plus which allows you to travel for free on all public transport; buses, trains and the Metrolink with in Greater Manchester.


Disabled persons railcard - http://www.disabledpersons-railcard.co.uk/

This card will save you a third off all train journeys. The card costs £18 for a year or £48 for a three year card.


If you need further help with your mobility you can use white canes to assist you either for navigation or simply for alerting people of a visual impairment or you can apply for a guide dog to assist with your mobility.


Social Services within your local council can provide you with white canes and can explain the different types available in addition to teaching you how to use techniques and skills to use them effectively to travel around independently.  To find your local social services and for more information visit; www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome


Guide Dogs is a national charity that provides blind and partially sighted people with a guide dog and training on how to use one to travel.  For more information visit; www.guidedogs.org.uk email them on; guidedogs@guidedogs.org.uk or call them on; 0118 983 5555. 


Virgin Journey Care

Virgin Journey Care provide assistance for disabled people traveling on trains in the UK.  You can call them and request assistance as long as you let them know the date and time that you wish to travel.  They can help you get on and off the train and can help you when changing trains mid journey.  You can also request this if you go to the ticket office in the train station and ask for assistance. 

Virgin Journey Care telephone;

08457 44 33 66



Careers

Access to Work

This is the government programme that will help you to be independent in your workplace by giving grants for necessary technology, a support worker, help with travel to-from and in work etc. Once you have registered you will be visited by a professional (likely to be someone from Action for Blind) who will assess your needs. Please visit the link for official information;

www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes


Blind In Business –   www.blindinbusiness.co.uk

Career advice for visually impaired graduates.


Work Choice

The aim of Work Choice is to provide a tailored coherent range of specialist employment services which can respond flexibly to the individual needs of disabled people and employers.  They provide programmes and services for disabled and disadvantaged people including work preparation courses, support in retaining employment, support in finding employment, etc.  For more information visit;

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_187696


Disability Employment Advisor (DEA)

DEA’s are based at the Job Centre and can help with finding employment.  DEA’s can offer; assessments to help see what type of jobs will be most suitable, work placements, referrals to training programmes, etc.  For more information visit;

http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/LookingForWork/DG_4000324


Action for Blind People also have Employment Co-Ordinators that can provide individual support. 



Equipment & Technology

There are many providers of equipment and technology and it is constantly changing.  You can get things ranging from a hand held magnifier to an LCD screen CCTV machine to magnify and enlarge documents, mail, packaging, and any other things that you may need to read. 


There are lots of different kinds of technology to make computers accessible whether it’s screen readers such as; JAWS, Supernova, HAL, Thunder, etc or screen magnifiers such as; ZoomText, Magic, etc. 


Apple have their own built in software to convert text to speech and is now on iphones as well.  Screen readers are also available for Smart Phones with a variety of phones made accessible with applications such as Talks from;

www.nuance.com/talks

and MobileSpeak from;

www.codefactory.es

For most modern Nokia smart phones & some Windows mobile devices; the iPhone has built in accessibility and even some Android devices have options available.

Here is a list of some equipment and technology providers that you can browse for helpful items or software;


The RNIB Shop - www.rnib.org.uk/shop/Pages/home

You can buy anything from talking microwaves to large print playing cards.  


Cobalt - www.cobolt.co.uk

Cobalt System LTD is an online catalogue of items that are audible.  They sell things like talking watches and talking clocks. 


HumanWare - www.humanware.com

Humanware provide lots of low vision aids including hand held electronic magnifiers and electronic text readers. 


Freedom Scientific - www.freedomscientific.com

From here you can buy from their range of software that makes technology accessible for people with visual impairments JAWS is a popular screen reading package and you can download a free demo from this website. 


Free screen reading programs:

Thunder
http://www.screenreader.net/

NVDA
http://www.nvda-project.org/

or if you don't want to download and install anything, just go to
www.satogo.com

and as long as you have an internet connection you can use
this to browse any website with speech feedback.


Entertainment & Leisure

It would be difficult to list everything that comes into this category as each individual obviously has different interests and hobbies.  All the national and local charities are committed to trying to reduce isolation and promote independence in the UK, so contacting national and local charities would benefit you in finding access to what interests you.  Here is a list of websites/organizations that may be of interest;


Audio description

You can get audio description on films and TV programmes.  For further information visit;

http://www.rnib.org.uk/livingwithsightloss/tvradiofilm/Pages/audio_description.aspx
For a general overview of what Audio Description is.

http://www.tvhelp.org.uk/
For listings of television and DVD performances available with Audio Description.

http://www.yourlocalcinema.com/
For listings of Cinema shows available with Audio Description.


British Blind Sports

http://www.britishblindsport.org.uk/index.php


VI Sailing

http://www.visailing.co.uk/offshorecruising.php


RNIB’s Talking Book Service

If you are registered blind your local authority can pay for your subscription for this.  For more information visit;

http://info.rnib.org.uk/tbookcat/pages/search.asp


If books are an interest it is worth checking with your local library service; they will often have a selection of audio books available and are usually also able to order in additional titles from other libraries when required.

Speak with your local social services and/or the RNIB to find out what else is out there for other hobbies and interests


Research and fundraising

The James Ferguson LHON research fund supports Dr Yu-Wai Man and Professor Chinnery in their research as detailed below. All donations to this fund are welcome and 100% of the money goes to LHON research.  Donations made to this UK-based organization by those in the UK enjoy certain tax benefits; please consult with your tax advisor.


The Newcastle Mitochondrial Research Group (MRG) is at the forefront of research into mitochondrial genetic disorders, and there are currently over 50 researchers working in dedicated facilities, fully-equipped with the latest laboratory technology (http://www.ncl.ac.uk/biomedicine/research/groups/mitochondrial.htm). Over the past two decades, the MRG has established itself as a centre of excellence for research into inherited eye disorders – with a rare combination of clinical doctors and basic scientists, each focused on different aspects of the role of mitochondria in normal health and disease. Professor Patrick Chinnery (P.F.Chinnery@ncl.ac.uk), a neurologist, and Dr Patrick Yu-Wai-Man, an ophthalmologist (Patrick.Yu-Wai-Man@ncl.ac.uk) have taken the lead into research on Leber hereditary optic neuropathy (LHON) – the most common primary mitochondrial genetic disorder in the population.

The LHON research currently being carried out in Newcastle has the following key objectives:

(1)To facilitate access to genetic testing for patients with LHON and other inherited eye disorders. Our aim is to speed the diagnosis of these rare disorders by developing faster and cheaper genetic tests, in collaboration with our colleagues within the Institute of Human Genetics, Newcastle University.

(2)To determine why only 50% of men and 10% of women who carry a LHON mutation (genetic spelling mistake) will lose vision during their lifetime. It is absolutely essential to find out what “risk factors” increase the risk of losing vision, and crucially why men are five times more likely to be affected than women. This will not only allow doctors to better advise LHON families in their clinical practice, but it will also reveal possible ways of “blocking” these risk factors and preventing visual loss to occur in the first place.

(3)To develop effective treatments for LHON. Dr Patrick Yu Wai Man and Professor Patrick Chinnery, together with clinical partners in Germany and Canada, have recently conducted the first treatment trial of a neuroprotective drug called idebenone in LHON (http://lhon.ncl.ac.uk/). Idebenone was found to be safe and the early results are promising suggesting that idebenone could be beneficial in preserving vision for patients affected with LHON. Other neuroprotective agents are in the pipeline and future studies will tell us whether these will be effective treatments for LHON.

If you would like to participate in the ongoing research programme into LHON and other mitochondrial genetic eye disorders, please get in touch with Mrs Gail Eglon. Gail is an experienced specialist genetics nurse who is coordinating several LHON research studies in Newcastle.

E-mail: Gail.Eglon@nuth.nhs.uk

Phone: 0191 241 8601



Support

Here are a few people in the UK that are happy to speak to anyone affected by LHON to give any advice or support;


James Ferguson – Oxford - studying at Oxford Brookes

Tel;  07956 127 164

Email;  jamesf32@yahoo.com


Glen Sheader – Bolton – Greater Manchester

Tel;  07917 865 026

Email;  glensheader@googlemail.com


Pete Sheppard – Witney - Oxfordshire

Tel;  07968 416 670

Email;  durdevil@gmail.com



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