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View Full Version : Genetics - Likelihood of passing scoliosis onto children



StacieA10
08-11-2004, 05:13 PM
I have read that because I had severe scoliosis, there is an increased chance that I will pass this disease onto my children. Is anyone aware of any studies on the likelihood of passing on these genetics? My curvatures were at 59 and 68 degrees before surgery, so I know Iím in the extreme case category. Does this further increase the chances for my kids?

LindaRacine
08-11-2004, 06:13 PM
Hi Stacie...

As far as I know, there are still no statistics on the probability of passing along idiopathic scoliosis to your offspring. There are studies in progress, so hopefully we'll know some day soon.

Although I know a lot of people who have scoliosis in their family, I know a lot more who don't. I'm one of 8 siblings, and the only one with scoliosis.

The only thing that I would recommend is that you have your kids checked by their pediatrician on a yearly basis.

Regards,
Linda

DaveWolpert
08-12-2004, 11:42 AM
I do think it's safe to say that there is at least a slightly higher statistical probability that your children will develop scoliosis. Scoliosis does tend to run in families, so there must be some genetic component to the spread of the disorder. Linda is right, though, that its inheritance is unpredictable and inconsistent.

There is no obvious genetic link to the severity of the curvatures. I have moderately severe scoliosis, while my sister and one of my cousins, for example, both have very mild 10-15 degree curvatures. These curves weren't even noticed by them or their doctors until carefully checked after I was diagnosed with a progressive curve. Mild kyphosis also runs in my family, though I don't have it. You really can never know.

Dave

Danite
08-18-2004, 01:04 PM
Good afternoon,
I did go through a very intensive Genetic research after having a daughter with a very similar deformity that was conducted by the University of Michigan Hospital in 1982 and the odds for me to have a child with a genetic deformity (Spinal) was actually below the normal or average percentile. I do have a congenital birth defect and the first spinal fusion in the state of Michigan in 1954, it is severe and rotoscoliosis with spinal stenosis...etc.
In 1984 my wife gave birth to our other daughter and she is completely free of any congenital spinal disorder, praise God. It is very scary to be in this position, I understand how you must feel. At 54 years old, I can no longer work full-time or do normal life activities without some form of accomodation. But I am very happy and glad to have two wonderful and beautiful daughters, for your information. The one with the scoliosis does have a rod and is working full-time at the age of twenty-two.
Never say never...

spincon58
08-20-2004, 12:39 AM
Hi,

Somehow I passed scoliosis to 3 of my children..my daughter 23 has a 26 degree, my son 21 has 14 degree and my daughter 12 has a 19 which still needs to be monitored...so I think I gave it to them....

LindaRacine
08-20-2004, 12:30 PM
Hi Connie...

If you haven't already done so, I'd like to urge you to contact Carol Wise at Texas Scottish Rite Hospital. She's conducting research into the genetics of scoliosis, and was specifically looking for families where at least 4 members are affected. I don't know if she's still looking, but it might be worthwhile for you to make contact. I have 2 phone numbers for her: (214)559-7881 and (214)648-1677.

Regards,
Linda

Danite
08-20-2004, 01:04 PM
I must add, that no matter what any genetic research professional discover, I will always wonder if some how it was pass by genetics. As I have said, my back is behind me, my disability is second and I'm a person first.

stees
08-22-2004, 10:49 PM
Stacie,

Another interesting consideration; research on and treatment for scoliosis is far advanced from what it was like when I was growing up, and even 15 years ago. Even 5 years ago. It may be that it is not such a problem as it was.

:)

stella
09-14-2004, 03:28 AM
my daughter doctor told me that if she ever has children they have to be cheked for scoliosis.
stella,

Danite
09-14-2004, 12:19 PM
Hi Stella,

It is true, but remember all children and even adults today are checked for Scoliosis, if discovered at an early age sometimes surgery can be avoided which is the best option. My daughters will have children someday (I hope) and they too will be checked for scoliosis, remember the disability does not make the person, we are individuals first and the disability is second.
I do not blame myself or my grandparents for the scoliosis but the condition of the environment and the way we live today is what I believe causes a lot of our deseases or illnesses. I pray and work so that someday in my children time, that people are judge by their abilities not disabilities. That all individuals with disabilities will understand that they are people first, and they can control their future. We all have barriers, or hardles that we must jump in our life, some of us have higher hardles, but we can do it. Never say never, and always fight for your rights, we our not second citizens but equals in this world.

Ms. Scarlett
10-20-2004, 03:46 PM
I've read recently that Scoliosis is passed on through every third generation but don't hold any faith in that because all the women in my mothers' family had Kyphosis and I have major Scoliosis. Not sure where on the internet I read that.

On the other hand, I have two daughters 18 and 22 years of age and a son 20 years old and none of them have any spinal deformaties.

Make sure that if you have young children your family physician checks their spine every time they go to see him/her.

Danite
10-21-2004, 12:46 PM
I too heard that it skips generations, I pray that it stops with me and does not continue in my family. From my point of view, it is not the scoliosis or surgery that makes our life difficult. It is the views and acceptance of others that make it an issue that turns it in to a psychological game. Even the medical model itself does what it can to promote such views that we are second citizens, all this does is promote denial, and plays mental games on us. We do not need to look very far, employment, sports, and even politics has a difficult time in accepting people with disabilities. Not too mention our own parents sometimes can not accept us as individuals or they blame themselves. Sorry about venting again, it is just one of those things...God Bless.

Mary Lou
10-21-2004, 01:55 PM
I wish there was more research into the hereditary part of Scoliosis. My 13 year old daughter has Kyphoscoliosis and as far as we can tell, she is the only one in either side of the family with Kyphosis or Scoliosis. Her doctor says her Kyphosis is most likely caused by Charcot-Marie-Tooth (CMT) disease/disorder. There are atleast four generations in her father's side of the family who are effected with CMT to some degree and none of them even heard of the Kyphosis/Scoliosis/CMT connection until I discovered it by mistake while doing my own research. My personal way of helping find answers that we are all looking for is to donate to Scoliosis research. I have no connection to the research organization other than I hope they can offer more information to us as a group.

Mary Lou

Danite
10-21-2004, 02:41 PM
Oh I forgot to mention that we did go through a genetic research program at University of Michigan when our daughter was born and they said it was very unlikely that it was genetic. Our daughter was born with severe scoliosis and received her surgery at the age of thirteen. But determined it was a total different desease, at the same time I can not help but wonder because of my own disability. They said that we had less then a 1% chance of having another child with scoliosis, and we did have another daughter after one year of trying and she did not have scoliosis, praise God. So never say never.

gotleyd
10-21-2004, 03:48 PM
Hello, I unfortunately have scoliosis because my mother has it. I'm the middle child of three and am the only one who has it. She doesn't have it as bad as I do. It doesn't bother her or progressed but I'm in constant pain and am considering surgery. I have a 15 month old son and I worry that he will get it but I will have to wait and make sure that something is done for him sooner if he does have it so he won't go through all this when he's my age. I'm 26.
His doctor says they don't check for scoliosis until he's 8. That was my first question on his first visit. If you are going to have children or are pregnant discusing it with your doc would be a good idea.
Leyda:) :)

Ms. Scarlett
10-22-2004, 12:01 PM
Well, as mentioned before, none of my children have it but my mother and her sisters all have it and I have it. My sisters and brothers do not have it - I'm the only one. It would be interesting to find out how the gene skipped going to my children.

Now, my son on the other hand has severe psoriasis - worst case his skin specialist has ever seen - his father has it too - very sad to see him when he breaks out. He's been in a 2 year study where he has had to try different medications and self inject a drug to either eliminate the disease or make it lie dormant - when the study ended he blossomed again like crazy. He was taking a drug that is given to people who have had transplant surgery - this was to boost the immune system. He is now being considered for gene therapy - he's only 20 and has suffered with this for 7 years.

I'm wondering if gene therapy would be an option for those who have a history of scoliosis or other genetic conditions like it BEFORE they decide to conceive children. Wouldn't mind looking into that one.

Ms. Scarlett
10-22-2004, 12:21 PM
Just a few comments on the term "Disability"

C.P.P.'s criteria:

* be under 65
* have contributed to the CPP for a minimum number of years
* have a "severe and prolonged" disability that prevents him or her from working at any job on a regular basis

First of all, what is determined by the government to be "Severe" and "Prolonged"?

In Canada, having scoliosis and having extensive surgery to correct scoliosis may not put you in the catagory as having a disability. I have been out of work since April 2003 and have been trying to get a disability pension.

The Federal Canada Pension Plan denied me disabilty benefits because I am able to use a computer and have a post secondary education - meaning - I can type and talk.

This decision was made by a person who was an RN who had never seen me, never spoke to me and merely was going by my medical history and employment history. There were only minimal medical reports available for her review at the time the decision was made. I have appealed the decision and go before a Tribunal Board in December of this year - it has been a long long time.

Two weeks ago I receive approval from the Provincial government who deemed me as being disabled. I made my application to them in February of this year and was approved on October 6th, 2004. I did not speak to anyone at all nor did I receive mail from them. I called their office to inquire about the status of my file on October 6th and they told me that they had just made the decision that day - and said that I was officially disabled.

Regardless of what the Provincial Government says, the Federal Government can still refuse my disability benefits - this is because the back problems people have vary from person to person and often times they cannot be physically seen by the naked eye.

I have been amazed by who they grant disability benefits to and have recently found that someone I know who has been diagnosed as being Bi Polar is on permanent disability through the Canada Pension Plan (she's 20 years old) - I have medical documentation which they also have in their possession which has that very same diagnosis and I'm STILL not deemed as being disabled in their eyes - they told me "Everyone gets depressed..." I couldn't believe it.

Very very unusual system here - I can only hope for the best at my hearing.

Has anyone else had difficulty getting their benefits after surgery??