Angela Jolie, warning controversia-ish!

[Tawanda]

I have been in a genome M.S. study at the U of SF since I got diagnosed. Other family members have M.S. and we are considered a cluster. I think it is only a matter of time before a similar genetic test to the one Jolie had will be available to determine higher likelihood of MS. If so, would anyone take it?

I asked a friend who had a child after her M.S. dx if she worried about passing the disease on (not likely as odds would have it, but more at risk) to her kids, and her response was that despite having M.S., she liked her life just fine, and her kids would be OK either with or without MS.

Actually, Merideth Viella and Richard Cohen gave a similar response when asked that question during an interview. Richard Cohen, overall, has had a good life. His dad had MS to and also seemed to have a satisfying life.

The bonus for these genetic tests will be better once a cure, vaccine, or outstanding treatments are available. I think Angela was brave, but where does it end? Will her bio daughters do the same test or just be scared to death wondering?

I just don't know about all this and was interested in other's opinions.

[mlissa67]

If there were such a test, and they could prove a genetic link, i would allow my children to make that decision if they felt it was right for them. I have a 2 or 3 cousin who has MS, but in my mind that's hardly a close relative. No one in my "close" family has MS, I am the first one (unfortunately).

I do think though its a great topic of discussion and thought provoking. I guess on one hand if they could prove that link and a blood test could show that my children had a higher propensity for developing MS I would definitely help them in making an informed decision.

Since early detection and treatment are key, as is the case with certain types of cancer, I would take the test if I had a family history.

Thanks for the question

[onlyairfare]

My kids would likely make their own choice about such testing in the future, based on whatever information becomes available at the time. So far they just let their doctors know about their family history (my husband had a correctable heart abnormality; I have MS), and then go from there. Ms Jolie had a very specific genetic test that was abnormal, indicating that she had an 87% chance of breast cancer and a 50% chance of ovarian cancer. That is a much higher risk than what my doctor has said about my kids and MS.

Woody Guthrie, folksinger and father of folksinger Arlo Guthrie, died of Huntington's disease, which is an autosomal dominant genetic disorder. That means his kids have a 50 - 50 chance of developing the disease themselves. Huntington's can be tested for, but some people choose not to have the testing done, because they don't want to know.

I suppose that is your question - would you rather know, or not? If the test shows you will not develop the disease, great news! But if the test is abnormal, then you will spend the rest of your life waiting and worrying for the inevitable axe to fall. And in the case of MS - some people do great and others go downhill rapidly, so you can't tell about the future.

If there is a cure or preventive available once the susceptible people are identified, then such testing would be invaluable. As it stands, Angeline Jolie has reduced her breast cancer risk from 87% to 5% - pretty significant! And good on her for speaking out so that people become aware that such testing is available and appropriate for some people.

[Tawanda]

It really is a curious situation...perhaps if you tested your infant, you could move close to the equator for the first 15 years of their life, according to what I have heard about M.S. and latitude! I doubt going on a DMD because your genes show a greater chance of M.S. would make any sense.

I just hope DD will never have this, and that she won't get rattled at every little body tick she might have in the mean time.

As for now, she is young and thinks nothing is really dramatically different with me, except that I am tired. i hate to be tired and she knows I am trying stuff all the time not to be. She gets a little of that aspect of my condition. Her independence is normal for her age, not spurred on by my M.S., at least.

I think we are getting so much better at diagnosing nearly everything these days and I am praying that good cures and treatments follow along shortly.

Nobody wants their kids to worry about ANY of this stuff.

[Jules A]

What I find most fascinating is that everyone has such different views and opinions in particular what we each feel is an acceptable % of risk of getting MS and also what we consider a close family history. I have a cousin with MS so imo it is a slam dunk that this runs in my family. Although I would never be comfortable purposely taking any chance of passing along a horrible disease like MS to a child I do admire those like Richard Cohen who believe his life had been worth it MS or not...just stating the obvious of course but his family does have a bit more of the monetary comforts than most which I'm sure hasn't hurt.

Personally although I am not remotely suicidal this life is difficult and if I had my choice of not being born or being born and having to deal with a debilitating disease like MS it is a no brainer for me... I would rather not have been born. Sorry if that bursts a bubble for anyone who believes their child would never feel that way.

So back to the OP's question, if my family had Huntington's or any other disease with the possibility of being tested to discover something early rather than later I definitely would take the test. Kudos to Angelina Jolie.

Just my opinion and like I said I do appreciate and enjoy the different views many of us have. Diversity is what makes the world interesting to me.

[aitch10]

I'm of the friend and Meredith Viera philosophy - MS sucks but life is good.

I took part in the UCSF study, as did my mom, and we're trying to get our 3 or 4 cousins who also have MS to participate.

If that study yields anything, with regards to finding the craptastic gene we all have, I would encourage my boys to get tested but leave it up to them.

[KatieAgain]

I too, like Jules A would have preferred to never have been born if it was known beforehand that I was going to have MS. In fact, my new advanced directives state no medical intervention for any future health issues that could result in death. But, that is just me...we all know this disease affects people differently and everyone has their own threshold of suffering.

I would not be tested now, because if there is a gene...well, I have it!

With that said, there are studies that have been going on with other MS population clusters that are not family related. So I am not convinced of the genetic component vs. environmental. Time might tell.

It is interesting that someone brought up Huntingtons. I too saw the documentary. That is probably the most horrible disease I have ever seen and the death is long and painful. The disease could be obliterated now that there is a test...and it is strictly hereditary. But, I guess we are not choosing to do that. And I am not in a position to cast judgement. I can only do what I believe is in the best interest for me and my family.

For right now, we can only go on the information we got, and that is not much. So it is best to try and live our lives to the fullest as best we can. But I sure would like Meridith Viera to hire a full time housekeeper and laundry service for me.

Katie
"Yep, I have MS and it does have me."

[Anthea]

Hello,

in my nearest family (uncles and aunts incl.) we have:

2x Spinal Muscle Atrophy III: Kugelberg-Welander
1x MS + CVI + Lymphadenitis (me *g*)
1x Fibromyalgie + Vasculitis (my aunt)
5x Cancer (1x lung + liver, 2x melanoma, 1x prostata, 1x bowel (is this the right word?))
4x Aneurysm (one aunt dead, my father 100% handicapped from the first one and in time operated with the second one, my other aunt with partially vision lost after the burst)
1x Morbus Chron

My oldest daughter with her 9 years becomes physiotherapy for her scoliosis (I hope I wrote it right), my youngest was tested for SMA and got physio when she was a baby but has evolved normal until now.

My oldest is aware of what may come (and one "nice" doctor told her to look at my venes: that they will be her future) and seems cool about it. My youngest is joking about injections, that they are fine for her if they are be giving to me.

Greets,
Karin

[onlyairfare]

I suspect that many people who have Huntington's in their family choose not to have children unless they have testing showing they are free of the disease gene, so in nations with modern medicine and available genetic testing, the disease will likely greatly diminish.

Availability of testing is a relatively recent development that was not available when Woody Guthrie and his wife were having kids. I saw Arlo Guthrie in concert last summer and he looked healthy; reportedly his children are also, as at least one of them performs with him. I've never seen anything published, nor heard Arlo mention the subject, but I suspect he had the testing done and he was negative.

A problem is that MS (and other diseases) is not likely strictly genetic; it appears to be multi-factorial. Thus far there is no single gene identified as responsible for MS, so even knowing "the gene" (if one were identified) is present does not mean you will develop the disease. In fact, with genetic factors thus far identified, most people with an "abnormal" gene do not develop MS. Rather, among those with MS, certain genetic characteristics are present in higher frequency than among those who do not have MS.

We'll see where this all goes.