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Passing on multiple sclerosis to siblings
Hello,
Dear all,
I'm new to this forum. To be honest, I registered because I wanted to ask a question regarding multiple sclerosis.
So far I've gotten informed about the disease, but to my knowledge, very little is known about the genetic factor involved.
I have a girlfriend for two years now, and we are considering marriage. Her grandmother had MS (she died), and I am being put under some pressure from my family to reconsider this relationship. Basically, they're afraid that our children might also develop MS. To my knowledge no one else from her family developed MS (including all relatives).
In terms of numbers, what are the odds of our children developing MS (compared to children with no relatives with MS)? I wasn't even thinking about this matter until my family said they didn't think it is a good idea to risk having children with MS.
I would appreciate any advice on this matter.
Thank you in advance
Dear all,
I'm new to this forum. To be honest, I registered because I wanted to ask a question regarding multiple sclerosis.
So far I've gotten informed about the disease, but to my knowledge, very little is known about the genetic factor involved.
I have a girlfriend for two years now, and we are considering marriage. Her grandmother had MS (she died), and I am being put under some pressure from my family to reconsider this relationship. Basically, they're afraid that our children might also develop MS. To my knowledge no one else from her family developed MS (including all relatives).
In terms of numbers, what are the odds of our children developing MS (compared to children with no relatives with MS)? I wasn't even thinking about this matter until my family said they didn't think it is a good idea to risk having children with MS.
I would appreciate any advice on this matter.
Thank you in advance
Hi Cressi and welcome to our MS forum. I believe you might be our first forum member from Sarajevo, and I must admit I don't know anything about your medical system.
Quix has given you some outstanding information to consider when you talk about genetic risks. I like to tell people that MS is not an inherited disease but you can be genetically predisposed to contracting it. There seems to be that increased possibility but it is not a likelihood, and there is a big difference between the two. I hope that this concept translates well for you.
I would like to tell ask you about this relationship instead of focusing on the medical side. Do you love her? Is your commitment strong enough to stand by her as a partner regardless of what happens to her? Is her commitment strong enough that she would stand by you if you were in an accident and horribly injured and needed a lifetime of assistance?
There are no guarantees when we marry that we will be the same as when we were young - here in the US we often times include in the vows - for better or worse, in sickness and in health. Marriage is a big commitment, but when you truly love someone you will do whatever it takes to be together. And that includes accepting that life has all sorts of risks.
I just celebrated my 35th anniversary - in the past ten years my husband had open heart surgery, he had a total hip replacement, I had a heart attack and now I am diagnosed with MS. And none of that changes our love for each other and the desire to live the rest of our lives as partners. I hope you will find that same kind of relationship with your partner.
Please come back and let us know how this all works out.
Good luck, Lulu
Quix has given you some outstanding information to consider when you talk about genetic risks. I like to tell people that MS is not an inherited disease but you can be genetically predisposed to contracting it. There seems to be that increased possibility but it is not a likelihood, and there is a big difference between the two. I hope that this concept translates well for you.
I would like to tell ask you about this relationship instead of focusing on the medical side. Do you love her? Is your commitment strong enough to stand by her as a partner regardless of what happens to her? Is her commitment strong enough that she would stand by you if you were in an accident and horribly injured and needed a lifetime of assistance?
There are no guarantees when we marry that we will be the same as when we were young - here in the US we often times include in the vows - for better or worse, in sickness and in health. Marriage is a big commitment, but when you truly love someone you will do whatever it takes to be together. And that includes accepting that life has all sorts of risks.
I just celebrated my 35th anniversary - in the past ten years my husband had open heart surgery, he had a total hip replacement, I had a heart attack and now I am diagnosed with MS. And none of that changes our love for each other and the desire to live the rest of our lives as partners. I hope you will find that same kind of relationship with your partner.
Please come back and let us know how this all works out.
Good luck, Lulu
Hi, what a dilemma to be caught in. You truly need to get your family better informed. I don't have exact numbers or risks, but I can give you the numbers I have found while reading the medical literature. I am a physician (not here officially) with MS.
Your family needs to know that while MS has a genetic component, it is not a straight genetic condition like sicle cell anemia, cystic fibrosis, or having blue eyes.
The general population in the US has about a 1 in 800 risk of developing MS. Many (a few dozen) genes are involved, and they haven't teased out which are the most important ones or what combination might confer the greatest risk.
We do know that if a first degree member of your family has MS your risk rises. First degree means parent, sibling or child - one birth away. If a parent has MS the risk rises to about 1 in 50 or 2%. The highest risk is if a sibling has it. The risk is about 1 in 30. It is slightly higher in twins and highest in identical twins.
Personally, I haven't seen the numbers for a 2nd degree relative like a grandparent. (2 births away) My impression is that it rises to somewhere between 1 in 200 to 1 in 300 hundred. But, that risk may be too high.
Given the huge number of things we can and will pass on to our children, that is not a particularly high risk at all.
You might look to your own family at things we wouldn't want our children to have, but for which there is a high genetic component. Are there alcoholism, drug addiction, Obsessive-Compulsive disorder, or other mental illnesses? Those will occur in the children and grandchildren at a far higher rate than 0.5% Alcoholism not only wrecks a person's helath, but also destroys families. That tendency is more like 1 in 5, I believe, in children of an alcoholic parent.
Is there depression in your family? This deadly disease runs fairly true in families and is not something that I would wish on anybody. But, it is treatable.
I'm not really asking you to answer these questions, but they put the picture into perspective.
The other known risk factors for MS include Northern European ancestry (though it occurs in most ethnic heritages (with a few odd exceptions like Hungarian gypsies and one type of Eskimo). That is something neither you nor she can do anything about.
Another is spending the first decade and a half in a higher latitude locale. Growing evidence suggests that this might be linked to Vitamin D levels, because of lower UV radiation levels and having more skin covered in the cooler climate. What we don't know is if maintaining adequate levels of Vitamin D would prevent the disease. That research is underway. I would certainly (having MS myself) monitor my child's Vit D levels and ensure that they were in the upper range of normal.
So, I can't be as definite as you would like, but I am confident, from reading the genetic literature on the disease that we are talking about a purely genetic risk being in the realm of 0.5% (half a percent) or lower for your children.
An idea would be for you two to schedule an appointment with a geneticist and ask this question. There are no tests to look for an MS gene, because none has been found, but the doctor could discuss the situation with you and perhaps give a ballpark. Geneticists are typically found in larger, academic medical centers and are often in the pediatric departments.
It is also possible that your family has a mistaken view of MS and believes that it is a fatal disease that always puts people into a wheelchair. This is not the case. A good number of people with suffer little disability, many only need some occasional assistance walking after several decades of the disease. People do not die of MS, though in severe cases, the complications of disability can cause death. Right now people with MS have a life-expectancy of about 7 years less, but that is dropping fast. As we age, MS researchers tell us that we can expect a normal life-span.
I hope this gives you a sense of the risk level. Good luck with your relationship.
Quix, MD
Your family needs to know that while MS has a genetic component, it is not a straight genetic condition like sicle cell anemia, cystic fibrosis, or having blue eyes.
The general population in the US has about a 1 in 800 risk of developing MS. Many (a few dozen) genes are involved, and they haven't teased out which are the most important ones or what combination might confer the greatest risk.
We do know that if a first degree member of your family has MS your risk rises. First degree means parent, sibling or child - one birth away. If a parent has MS the risk rises to about 1 in 50 or 2%. The highest risk is if a sibling has it. The risk is about 1 in 30. It is slightly higher in twins and highest in identical twins.
Personally, I haven't seen the numbers for a 2nd degree relative like a grandparent. (2 births away) My impression is that it rises to somewhere between 1 in 200 to 1 in 300 hundred. But, that risk may be too high.
Given the huge number of things we can and will pass on to our children, that is not a particularly high risk at all.
You might look to your own family at things we wouldn't want our children to have, but for which there is a high genetic component. Are there alcoholism, drug addiction, Obsessive-Compulsive disorder, or other mental illnesses? Those will occur in the children and grandchildren at a far higher rate than 0.5% Alcoholism not only wrecks a person's helath, but also destroys families. That tendency is more like 1 in 5, I believe, in children of an alcoholic parent.
Is there depression in your family? This deadly disease runs fairly true in families and is not something that I would wish on anybody. But, it is treatable.
I'm not really asking you to answer these questions, but they put the picture into perspective.
The other known risk factors for MS include Northern European ancestry (though it occurs in most ethnic heritages (with a few odd exceptions like Hungarian gypsies and one type of Eskimo). That is something neither you nor she can do anything about.
Another is spending the first decade and a half in a higher latitude locale. Growing evidence suggests that this might be linked to Vitamin D levels, because of lower UV radiation levels and having more skin covered in the cooler climate. What we don't know is if maintaining adequate levels of Vitamin D would prevent the disease. That research is underway. I would certainly (having MS myself) monitor my child's Vit D levels and ensure that they were in the upper range of normal.
So, I can't be as definite as you would like, but I am confident, from reading the genetic literature on the disease that we are talking about a purely genetic risk being in the realm of 0.5% (half a percent) or lower for your children.
An idea would be for you two to schedule an appointment with a geneticist and ask this question. There are no tests to look for an MS gene, because none has been found, but the doctor could discuss the situation with you and perhaps give a ballpark. Geneticists are typically found in larger, academic medical centers and are often in the pediatric departments.
It is also possible that your family has a mistaken view of MS and believes that it is a fatal disease that always puts people into a wheelchair. This is not the case. A good number of people with suffer little disability, many only need some occasional assistance walking after several decades of the disease. People do not die of MS, though in severe cases, the complications of disability can cause death. Right now people with MS have a life-expectancy of about 7 years less, but that is dropping fast. As we age, MS researchers tell us that we can expect a normal life-span.
I hope this gives you a sense of the risk level. Good luck with your relationship.
Quix, MD
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