Leber hereditary optic neuropathy (LHON) Community

Meet, discuss & support other patients or families living with Leber hereditary optic neuropathy (LHON). Contribute to topics, or just share what's on your mind.

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SandraRC
moderator

For the recently diagnosed

If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?

formerEURORDISstaff
moderator

LHON blogs

I just found a good about LHON by a woman named Maria. Maria was affected by LHON a couple of years ago, and has quickly become a very visible and important part of the global LHON effort.

Her blog is here: http://www.girlgoneblind.com/

What other LHON blogs do you follow?

A great blog written with humour and warmth and pulling no punches. I met Maria at the US LHON Patient day in Washington last year and she has quickly become a linchpin of the US community and supporter of fundraising for LHON research. The blog outlines some of this work as well as the frustrations but also fun of daily life with vision impairment. LHON is not a club anyone chooses to join, but once you are enrolled you might as well enjoy it as best you can!

lissapoincenot
moderator

http://blindgirlscanrockheels.com by Jessica Loomer is also great fun!

http://visionfora.blogspot.com by Penny Duffy chronicles one mom's journey through LHON with her young daughter.

ASANOL
moderator

Being a mother of a LHON child

Bearer mothers count with a major role in this pathology. They are used to feel guilty about their children's development. Those who have gone through this have much to do helping others. Those who are thinking about having children, have much to hear. Those who are facing their children's debut can rely on the members of this community.

Notice: This text content has been translated automatically by a third-party service.

I am also a bearer of the disease but it hasn't developed yet. I have a 5 year old son and of course I am worried that he could develop it, my cousins, a boy and a girl, have developed it in different levels. When I found out about it I was seeking to have another child, and that supposed quite a shock, actually it was hard for me to accept that if I had another child, it wouldn't be a healthy one, and that has conditioned our decision, we thought about a donation, to chose the gender, to chose a girl because it would have less possibilities of developing the disease, but I thought I will leave her the same situation that I had at that moment, to chose if having children or not because of the fact of transmitting the disease. We thought about egg donation, but for me it was difficult that it wouldn't be mine. And when the matter of London, of the third parent arose, I contacted clinics and researchers to see how the matter would go. Afterwards I spoke to ASANOL and it seems that through them it will be easier, though the thing goes slowly. Now we have appointed ourselves for the United States test, although we first want to speak to the doctors to see what guarantees or conditions they give us. And if not, we will wait for the third parent from London, if it doesn't take too long...
Besides, my son is always asking for a sibling, which not many children do...
For me it was very important, I had a bad time and I had to go to the psychologist, but now I am better. With enthusiasm, illusion and hope that there may also be a cure, for those who have it. I pray that my son wouldn't be one, but in principle I don't blame myself for transmitting the disease, because I didn't know before having my little one!!

I wish you all the luck of the world Laura Martinez,
Life is sometimes hard, and we want the best especially when you are a mother like me.
I have just found out a few weeks ago that I am bearer of Lohn, this mitochondrial disease, I have a 23 years old son with mental retardation and autism and the reason, we recently found out thanks to the advance of science, diagnose trip 12, bad luck from life, in other words the geneticists call it a defective foetus. That when forming there was a failure due to bad luck. Specifically back luck. Then I have a daughter that is divinely talented and until now everything normal, she is 13 and leads a happy life. She is judgemental, studious, artist like what she is fascinated to do is to play guitar and sing in her spare time.
Now, I also carry in my womb for the science a foetus still of 21 weeks and 2 days but for me it is my baby, product of the love that my beloved husband and I feel. It is hard for a mother that doesn't even know that is a bearer, to find out that all your children have the risk of being bearers, at any time they could develop this terrible disease, like a time bomb. Logically I pray God that though we have the bad luck of bearing this disease, we may have the good one of not developing it !!!
The saddest thing is there is no healing nor treatment until now.

I suppose the fears are very common in every country and specially the mothers, there is obviously no one to blame at all but then for the same fact of being a mother with the mitochondrias affected with Lohn, undoubtedly we pass them to all of our children, unfairly but it is what it is.

I have known this disease for nearly already many years, I have a brother that developed it at 20 years old, in the present he is 44, he suffered very much with the blindness until today, with the hope of seeing again.

This is a very difficult matter. Each of us has an idea of what is better or worse, and logically reaching a consensus is imposible.
In my case I started to lose my vision when I was 21 but it wasn't until I was 28 (just married) that they confirmed the LOHN.
To tell the truth I have never been very "nanny" but, immediately, I decided that I didn't want my child to go through what I had... years of uncertainty, thousands of tests, doctors, hospitals, etc.
Of course that a person with a visual disability can be equally or even happier than a person that does not suffer from a disability, in fact I am still working and leading a life as normal as possible with a severe vision loss but just the fact of suffering from migraines, going to hospital every 6 months for the analytic control of the complexes I am taking (Carnitine, Omega 3 e Idebenone), campimetry and other annual tests, "make me remember", not only me but the ones around me, that I suffer from LHON.
Luckily, I am working for a company where I am valued and doesn't hinder my medical appointments (they can't by law, but we know the reality is very different) but... the 2 or 3 days that you are absent from work to go to the hospital or... the day that they dilate your pupils make you "different" to the eyes of everyone else.
Of course I am not going to blame my mother for my pathology (though she wouldn't know) but, from my point of view, and without seeking to be unkind, it seems to me an irresponsible act to decide to have children knowing that you are bearer of a disease. Your independence as human being is cut short, though it may only be to accompany you to your appointment when your pupils are dilated but... that dependence at least for me, is what frustrates me the most.
I would like to ask a question to the women that suffer from low vision, not only to the bearers of the mutation: Would you want your children and descendants (you mustn't forget this is a chain) to be advocated to live well with a sword of Damocles for life, or else with a severe visual limitation? Me, I have decided I wouldn't.

martacampabadal
moderator

LHON's World map

Welcome all the new members of the LHON community. We are growing little by little!

To all the new members, we encourage you to introduce yourselves to the forum and if you want you can also share your testimony in the Understand section.

Don't miss the map of the Members section (only visible to registered members). If you haven't added your location yet, the moment is now! You only have to go to your profile, add city and country.
https://www.rareconnect.org/es/community/a...

With this map it will be easier to contact other patients who live nearby.

Notice: This text content has been translated automatically by a third-party service.

ASANOL
moderator

Terapias de fecundación: "Tres Padres" y otros ensayos similares EE.UU.

En las últimas fechas se están desarrollando varias iniciativas para que las parejas con mujeres portadoras que estén pensando en tener hijos puedan tenerlos sin que estos sean portadores y por tanto posibles futuros afectos.
Estas investigaciones suponen un importante avance para la erradicación de la enfermedad, pero también un dilema ético y un reto técnico importante.

formerEURORDISstaff
moderator

LHON Aids and Supports

I saw this page from LHON Global on useful aids for people living with LHON https://lhon.global/lhon-useful-aids/

It got me thinking, what do you or your family use to support your management of LHON symptoms?

Please share links or stories so that others can learn what is working...

Living with LHON since 1976

My sight dropped to less than 1% due to LHON in 1976. At the time it was diagnosed as Optic Atrophy cause unknown. I then did part of a Biology degree but switched to Computing. I have worked in several companies around the UK doing programming, analysis, design, project management , It consultancy.

My diagnosis was changed to LHON In the 1980s, but there was almost no info on it. I began following research and set up the first LHON HOME PAGE website in 1994

Since then I've updated the site and the latest version is at http://lhon.global/