fear to have child...

[daniariete2000]

Hi all ,

I'm a man of 38 y.o. with fibromyalgia (maybe also cfs but don't know exacly).
I would like to have a child with my girlfriend but very afraid of possible bad genetic transmission.
What do you know about this ?
Are there any researchers who expressed any opinion and suggestions about this topic ?

Thanks a lot

Daniele

 

[snowathlete]

A few have looked at this and I think the general consensus is that it does occur more in some families, along with autism, though research isn't very advanced in this area yet.

A lot of people have children no problems. Unless you have it running in your family a lot then I wouldn't worry too much. I had the same fears, I do understand your having them. You likely also have concerns about provision for your child and how you might cope with it all, but I decided to go ahead and it was absolutely the best decision ever! My daughter is seriously robust and strong. Of course I keep a closer eye on her than most for any change but I don't expect any to occur.
It is hard work, being ill and dealing with all the pressures of having children but well worth it in my view.

 

[Misfit Toy]

Hi dani, I am sorry you haven't had more responses. I know people here have had kids with CFS or FM. Some people get better with having a child and some get worse. It's the question of can you do it energy wise. Also, I don't know many who have had CFS or FM who have passed it on. The child is fine.

I have a friend with West Nile Virus. I have never met anyone sicker. That poor girl, at one time. She got pregnant, had the child and is CURED. Also, her baby is perfectly fine.

Maybe I am wrong, but it doesn't seem to be passed on from many I know who have kids while being sick.

 

[Tito]

It seems there is a hereditary factor in fibromyalgia (http://www.mayoclinic.com/health/is-fibromyalgia-hereditary/AN01962). Beyond that, there is the question of how will the ill parent cope with a child and the -often forgotten- question of how will a child cope with an ill parent. A chronic illness impacts family dynamics quite a lot.
The problem is that a parent with a chronic illness is often 'mentally unavailable'. The pain, the dizziness, the fatigue, all these debilitating effects of the illness make people mentally unavailable. Children need 'available' parents to bond with them.

 

[SOC]

It seems there is a hereditary factor in fibromyalgia (http://www.mayoclinic.com/health/is-fibromyalgia-hereditary/AN01962). Beyond that, there is the question of how will the ill parent cope with a child and the -often forgotten- question of how will a child cope with an ill parent. A chronic illness impacts family dynamics quite a lot.
The problem is that a parent with a chronic illness is often 'mentally unavailable'. The pain, the dizziness, the fatigue, all these debilitating effects of the illness make people mentally unavailable. Children need 'available' parents to bond with them.

While I agree that children need available parents, no child has the ideal upbringing. Many children have parents who are not fully emotionally or mentally available due to work, economic worries, hobby obsessions, or their own less than perfect upbringing. Most of us over 30 were raised by emotionally unavailable fathers, after all, and we don't think that's a reason not to exist. I don't see why people with disabilities should consider themselves less valuable as parents than healthy people who are less than perfect in other ways.

While there are probably hereditary factors, the chance of passing fibromyalgia or ME/CFS tendencies to the next generation appear to be significantly less than 50%. So it is possible, but far from likely, that you will pass on the illness to a child. Even if you do, the chance of that child getting good treatment is high. First, because as a parent with the illness you will be much better prepared and educated to deal with the illness at the first sign. (I speak from experience here.) Early diagnosis and aggressive treatment lead to a better prognosis. Secondly, research and treatment are improving rapidly (unlike 20-30 years ago when many of us got ill). The healthcare picture for a person who develops ME 20 years from now will be very different from what we faced even 5 years ago.

If you want children, I don't see that FM or ME/CFS should keep a father from having them. Mothers have to take into consideration the effect of pregnancy on her health, of course, but it's not something that should prevent her from having children at all if she wants them.

 

[RosieBee]

First me then my daughter developed ME. Although there is undoubtedly some form of genetic component involved with contracting ME, the study of epigenetics tells us we are not slaves to our genetics. Gene expression can be ameliorated by the environment. Dr Amy Yasko recommends preconception supplementation to support any known biochemical pathway mutations. That is what my daughter (now in her 30s) is doing to prepare her self as best as possible for pregnancy, to protect herself as well as any potential foetus.
http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-2/

 

[Tito]

Personally I think each situation is different. ME/CFS and fibromyalgia have that fluctuating and debilitating wave of cognitive symptoms that make a person 'unavailabe' for proper bonding with a child. I would not say that for someone who is deaf for example or who had a leg amputated. There are unfortunately many healthy parents who are incapable of offering proper parenting, but I do not see why it would be wise for an ill person to be an 'unavailable' parent simply because some healthy people are equally bad. The problem is also the uncertainty of the illness: some people will improve over time, some people will remain stable, some people will deteriorate. It is really a bet as I do not think there is a way to predict the evolution of these illnesses.

Regarding the fact that in 20 years' time things will be better in terms of medical care, I doubt and, at the same time, I would love to be totally wrong. I fell ill almost 27 years ago and if things might have improved in terms of diagnosis, I do not really see any fundamental improvement in terms of treatment or cure. If there was, this very forum would not exist. It is more than clear that we are all figuring out the best supplements to make life with these illnesses slightly more bearable. 40 years ago, Nixon announced that cancer would be cured in 5 years. Despite billions spent, for many cancers, we are still using the treatment protocols of the 70's. Likewise for HIV. Unfortunately, ME/CFS and fibromyalgia do not receive that level of funding. Even for an illness like MS that is probably closer to ME/CFS, despite the fact that it has been acknowledged as a auto-immune disease for 30(?) years now, there is still no cure.

About the issue of epigenetics, it seems to be quite a novel concept in ME/CFS and fibromyalgia. It might take decades before a way to change the expression of a gene is found.

I truly understand that people want to have a normal life and have children like anybody else. I have no doubt that people have the best intentions for their children and deeply love them. What I am just saying here is to imagine the situation from a child's point of view as there is a real risk he/she might become ill one day and/or he might have an 'unavailable' parent. And the context is crucial, such as the socio-economic situation of the family (large family? Integrated or not in a small community?) and the medical status (a parent completely bedbound or someone stable who can work part-time?) There is no right or wrong answer.

Preparing yourself for the better is uplifting and feels good now. Preparing for the worst helps to live with yourself if the worst was to happen.

 

[caledonia]

Hi all ,

I'm a man of 38 y.o. with fibromyalgia (maybe also cfs but don't know exacly).
I would like to have a child with my girlfriend but very afraid of possible bad genetic transmission.
What do you know about this ?
Are there any researchers who expressed any opinion and suggestions about this topic ?

Thanks a lot

Daniele

Just because you have the genetic potential to get ME/CFS, doesn't mean you will get it. My suggestion would be to have you and your girlfriend's SNPs tested at 23andme.com. Watch my video series Methylation Made Easy to get an idea of the basics of genetics and methylation issues in ME/CFS. The link is in my signature.

If your girlfriend has better methylation SNPs than yours, the odds are, it will improve the child's SNPs. Both parents can take supplementation according to their SNPs, detox metals, etc. in order to get as healthy as possible as you're also passing on your epigenetics or body's environment to the child, in addition to genetics.

I've been listening to the MTHFRsupport.com Blogtalk Radio podcasts and it was suggested to do this for a 6 month period prior to trying to conceive. This, of course, should also be helpful for your fibromyalgia, so I suggest doing it regardless of whether you decide to have children or not.

On a personal note, I did grow up with a mom who had ME/CFS. Looking back, I have no idea how she raised 5 kids. There were certain adaptions which were made. She had a lot of support from my dad, who did all the grocery shopping (which he actually loved!) and a lot of the cleaning. She made the kids as independent as possible - so we all had various jobs around the house we did on a regular basis, we all made our own breakfast and lunch (she handled supper). If we wanted to do an extracurricular activity such as sports, we had to find our own transportation. I don't feel deprived, as that is all I've known.