Last reply 2 months ago
Preventing MS – the next generation

Hi everyone,

Once again, I’m hoping you can help me out. I’m an MSer and a journalist who interviews for Shift.ms and also writes for the BartsMS blog (MS and alcohol, MSexism, Why our Words and Stories Matter etc). I am currently writing a piece for the Barts blog on preventing MS in those related to us. As you probably are aware, studies have shown that if you have MS – your children and family members have a slightly better chance (between 1-5%) of developing the disease as well.

Knowing this, I was interested to find out what MSers would do to help prevent this risk. I would also be interested to hear from anyone with close relatives/siblings with MS as well.

Some questions:

Would you tell your children they have an increased risk of getting MS?

Would you be prepared to take part in research where information about you is collected online? Would you give blood or genetic tests? Would you give info about your children? Would you allow your children to have a blood or genetic test?

How often would you be willing to provide info over time – for example twice a year? And for how long – one year, five years or even ten years or longer. What would motivate you to do this?

Finally – what sort of strategy would you do to reduce the risk of MS. For example, would you take on lifestyle changes like eating less sugar, exercising more – or taking a pill every day? Would you be happy for your children to take a pill every day?

If you want to message me directly, please go ahead. Also I will not quote anyone unless I receive their permission.

Thanks so much in advance,

Rachel
PS I am the only one in my extended family with MS. I have two adult children who I hope – obviously – never get it.

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edmontonalberta
2 months ago

@longboat

It has almost been a day; the responses are what I expected.

Why would you / me / anyone focus on the negative things occurring in our lives? Why would we pass the MS burden challenges onto children?

I agree with the concept of healthy eating; this should be done whether we have MS or not…

“blood or genetic test?”??? Is there something we do not know? And do not want to know???


look
2 months ago

I agree with the above reply; I would not wish to involve my children in any form of blood testing etc and agree that everyone should make efforts regardless to live healthily and not smoke etc. I certainly wouldn’t be prepared to cause my kids any unnecessary worry -think our young people have enough to worry about in ordinary life. Not sure what is the point of collecting and collating data – for what purpose?


mamawals
2 months ago

I’m making sure my kids take vitamins with vitamin d, eat healthy, and play outside a lot. When they get routine blood tests for thins like lead or anemia, I ask their pediatrician to also test their vitamin d levels. Other than that I plan on leaving them alone.


highlander
2 months ago

@longboat
Be careful what and how you ask a question.
Eugenics and Dr Mengele ring any bells….read up on your history.


daniel123
2 months ago

@longboat
The only thing I can influence is my son’s vitamin D level. That’s what I do.

One of the most important measures regarding my son (15) is to calm him down by explaining to him that as a son of an MS patient he has only a slightly higher risk of developing MS himself.

And I take part in research, they get all info from me and even blood. I fill out a huge questionnaire twice a year.

As long as the causes of MS are unknown, there is no reason for specific actions. Since my MS diagnosis I have taken many measures such as basic therapy, nutrition, supplements and “magic” things. But I am living proof that none of this is useful.

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