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

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 a patient and mother of a 6 years old girl... I learned about the illness 2 years ago because of what my daughter had.. it is difficult to know that she is bearer of "something", of which there is still no cure for, and to know that she could develop the illness or not...

ASANOL
moderator

Hello,
Those who are bearers and have been pregnant, have you ever thought about abortion? Have you ever chosen the sex of your child? Better boy or girl? Do you know anyone of your family that has question themselves about this? Have you deprived yourself of having more children because of this pathology?

I learned about the illness when my girl was 3 years old, but I have taken the decision of not having any more children because of the knowledge of the illness, at least while things are the way they are nowadays.

helenalindemark
moderator

I am also a patient and I have a 21-year-old son that developed Lebers at 14. I also have a 11-year-old daughter.

It has been hard and I understand the thoughts that you mention about having kids or not. But now, when we got used to the situation quite well, I can say that life can be good although the sight is not well. There are other senses that you can develop more when you loose a great part of the sight. And the person still is the same person or even stronger... There is an expression in English "What doesn't kill you makes you stronger. And I actually think it is true.

There are so many things that may happen in life and many young people nowadays that are perfectly healthy have serious psychological problems (at least here in Sweden) with no illness.

I also believe that soon there will be a cure. In England it is already possible to avoid the mutation to be transmitted to children.

It is important to recognise also that we are not guilty as mothers. It is like a lottery... And our children's life, with or without Lebers, can be wonderful.

I fully agree with Helena. My 28yr old son's life (affected 4 years now) is certainly different as a result of his vision loss but it is not necessarily worse - in fact he is happier now than before he lost his sight. We are so proud of him and the idea we would have chosen not to have him had we known about this is unthinkable.

That said, of course he and we are keen that he recovers vision but I am sure this will become possible in the years to come. My advice to my unaffected daughter is to ignore this condition when planning her family and act in the same way she would have done if she did not know she is a carrier. It is natural to worry, but the science is developing every day.

ASANOL
moderator

Hace unos días nos han informado desde AEPMI, la asociación española de enfermedades mitocondriales, que van a iniciar un ensayo en EE.UU. (Nueva York) sobre fertilidad y enfermedades mitocondriales. Están seleccionando una pareja en España. Ya tenemos una que probablemente se sume. Si a alguien le interesa, que se ponga en contacto con nosotros.

I think we need a new topic for this post, rather than continuing in the current topic.

martacampabadal
moderator

Yes, that would be much better russellgww.

Go to: https://www.rareconnect.org/en/community/l...
And click on 'Start a discussion now'. A text box will appear.

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.