Foundation webinar on genetics

For everything and anything else not covered in the other RLS/WED sections.
Rustsmith
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Foundation webinar on genetics

Postby Rustsmith » Wed Nov 09, 2016 10:49 pm

For anyone who is a Foundation member and who did not get to sit in on the webinar today on genetics, I highly recommend hearing what Dr Rye had to say. This is doubly true for anyone who has paid to have their own genes analyzed by one of the firms that do ancestry research genetics.

In his presentation, I found out why I do not seem to get any benefit from increasing my ferritin levels. I have one of the genes that dramatically increases the chance of getting RLS (3 times more likely than someone without it). This gene is also "rare" and occurs in less than 4% of the population. As I understood it, tests also showed that increasing iron levels are completely ineffective when this gene is the source of your RLS susceptibility.

I also learned that there are six genes that have been identified and so you have 12 chances of getting one that increases your susceptibility. So that means that you have 12 chances and as the greater the number of the genes that you have increases, the odds increase dramatically. I think I also understood that the higher number of hits that you have, the greater potential severity of your RLS.

I am anxious to be able to see his slides again so that I can do a detailed comparison to my own genetic results. I already know that I have at least 3 hits and quite probably more.

Finally, one of the questions for Dr Rye was whether he thought that a cure for RLS would ever be discovered. Surprisingly his answer was yes. I didn't get all of it, but I think that he stated that of all of the diseases that are currently being studied for genetic contributions, the two that are ranked as the most promising for breakthroughs are macular degeneration and RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: Foundation webinar on genetics

Postby Polar Bear » Thu Nov 10, 2016 1:21 pm

To hear that there is the possibility of a breakthrough for RLS is so wonderful. It may take some years, might not even be in my lifetime, but to hope that my own younger family and grandchildren could have effective treatment (at the very least) is heartening.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Foundation webinar on genetics

Postby ViewsAskew » Thu Nov 10, 2016 9:53 pm

I like Dr Rye so much - wish I'd have listened. Will have to watch it when it's posted.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Location: Dublin Ireland

Re: Foundation webinar on genetics

Postby legsbestill » Thu Nov 10, 2016 10:33 pm

A cure!!!! Have been thinking about that all day - I was sure it was a life sentence. I will continue to mess around with my various treatments with renewed hope and positive energy. Am looking forward to seeing the webinar when it is posted. Thank you so much for posting about this Rustsmith.

Rustsmith
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Re: Foundation webinar on genetics

Postby Rustsmith » Fri Nov 11, 2016 12:27 am

As PB said, Dr Rye's envisioned cure may not be in our lifetimes, but it shines hope that the next generation will not have to suffer as we have.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Foundation webinar on genetics

Postby Yankiwi » Fri Nov 11, 2016 7:57 pm

RLS runs in my family and I often hope my nieces and nephews don't get it but some will. A cure for them would be wonderful even if it is too late for me.

legsbestill
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Location: Dublin Ireland

Re: Foundation webinar on genetics

Postby legsbestill » Sun Nov 13, 2016 10:45 pm

I feel the same for my children. For now, I encourage them to keep their ferritin levels high but it would be fantastic to think that there might be a cure if they are ever struck down with it. It is also great to be able to tell them that there is hope of a cure. I know that they have struggled with the prospect that I will never recover from this condition and it is nice for them to feel that there may be some hope for me even if in reality it is likely to be too late.

legsbestill
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Location: Dublin Ireland

Re: Foundation webinar on genetics

Postby legsbestill » Sun Nov 13, 2016 10:46 pm

Btw I hope that you are not badly affected by the earthquake Yankiwi. It looks pretty awful on the news here.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Foundation webinar on genetics

Postby Yankiwi » Mon Nov 14, 2016 3:22 am

We are on the West Coast of the South Island, on a diagonal from the epicenters--yes, centers--there were two distinct quakes plus the hundreds (and lots more to come) of aftershocks. We woke up with the quake at a little past midnight. Our house is a two storey colorsteel house so it really rocked and rolled but nothing even fell off a shelf. We went downstairs to a safe place and waited until we felt it safe to go back to bed and then there was a fairly big aftershock so we stayed down longer. We felt safe after looking at my iPad and finding out where the quakes were. A major fault line is only about 20k from our house and that would be a disaster.
My husband is very ill with cancer and chemotherapy so we had to be extra careful going downstairs. We have two railings and as long as he can safely climb up and down we're going to sleep upstairs as it gives him some exercise.
Earthquakes are very frightening and we have only experienced small ones or big ones from a distance. The trouble with earthquakes is once they start you don't know when they will stop until they do.

ViewsAskew
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Re: Foundation webinar on genetics

Postby ViewsAskew » Mon Nov 14, 2016 4:25 am

Yikes - sounds scary enough. May I ask, what is a colorsteel house? I could look it up, but I'm lazy and lethargic from the meds I'm taking and the methadone withdrawal.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Yankiwi
Posts: 270
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Foundation webinar on genetics

Postby Yankiwi » Mon Nov 14, 2016 12:40 pm

Colorsteel is a brand of corrugated iron which comes in colors which are somehow part of the steel. It doesn't rust or degrade, at least very fast. We say we live in a tin house but it is very strong. Ours is a medium-deep blue and blends right in with the small mountain across the road from us.

legsbestill
Posts: 349
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Location: Dublin Ireland

Re: Foundation webinar on genetics

Postby legsbestill » Mon Nov 14, 2016 8:29 pm

Wow, it sounds very scary although top marks to your house which aside from riding earthquakes well also sounds very picturesque.

Rustsmith
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Re: Foundation webinar on genetics

Postby Rustsmith » Wed Nov 23, 2016 1:37 pm

The slides from the webinar have now been posted on the Foundation's site in the Members Only section.

I was able to compare my DNA results with what as presented and found that I have about 6 times higher risk of developing RLS than the normal population. I'm not sure, but I think that I remember that Dr Rye also mentioned that they currently believe that higher your risk numbers often result in more severe RLS.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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