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  1. R

    Adults please

    Yeah you need to look at gluten as a contributing factor in your health. http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji Over 50% of the population has a problem with wheat. In my opinion 100% of CF's that have any residual bowel...
  2. R

    Adults please

    Yeah you need to look at gluten as a contributing factor in your health. http://www.greenmedinfo.com/page/dark-side-wheat-new-perspectives-celiac-disease-wheat-intolerance-sayer-ji Over 50% of the population has a problem with wheat. In my opinion 100% of CF's that have any residual bowel...
  3. R

    Bad news from Vertex

    I talked to Vertex yesterday regarding the trial for 809, they said it is not enrolling any more. I asked why and now I know. She did say that I am on the list for the 661 study. Two steps forward one step back.
  4. R

    Bad news from Vertex

    I talked to Vertex yesterday regarding the trial for 809, they said it is not enrolling any more. I asked why and now I know. She did say that I am on the list for the 661 study. Two steps forward one step back.
  5. R

    Getting a script for Kalydeco if you are not G551D

    Maybe we should put a petition together to use to show our doc's, vertex and insurance companies. We could base it on the following: 1. Vertex research showed a 5-8% activity with the F508 patients ( this is not enough to get a new drug approved) but could help us somehow. 2. We can base it on a...
  6. R

    Getting a script for Kalydeco if you are not G551D

    Maybe we should put a petition together to use to show our doc's, vertex and insurance companies. We could base it on the following: 1. Vertex research showed a 5-8% activity with the F508 patients ( this is not enough to get a new drug approved) but could help us somehow. 2. We can base it on a...
  7. R

    Getting a script for Kalydeco if you are not G551D

    Good Job. Keep us posted on this!
  8. R

    Getting a script for Kalydeco if you are not G551D

    Good Job. Keep us posted on this!
  9. R

    Top 10 great things about having CF!

    Top 10 great things about having CF! <ol> <li>Jury duty and PE class is optional.</li> <li>When a friend forgets their medication you’re pretty sure “you got that”.</li> <li>When you jokingly say I got to fart, everyone leaves the room, quickly.</li> <li>You are pretty sure you can start your...
  10. R

    Top 10 great things about having CF!

    Top 10 great things about having CF! <ol> <li>Jury duty and PE class is optional.</li> <li>When a friend forgets their medication you’re pretty sure “you got that”.</li> <li>When you jokingly say I got to fart, everyone leaves the room, quickly.</li> <li>You are pretty sure you can start your...
  11. R

    Disability benefits - How much do you receive?

    Thanks for answering. SSDI pays more than SSI right. Can you get both? How much were you making per year? (not to be personal but this system of the SS office makes it so complicated. It seems if someone makes $10k per year gets the same benefits of someone making $30k per year. I think they max...
  12. R

    Disability benefits - How much do you receive?

    Thanks for answering. SSDI pays more than SSI right. Can you get both? How much were you making per year? (not to be personal but this system of the SS office makes it so complicated. It seems if someone makes $10k per year gets the same benefits of someone making $30k per year. I think they max...
  13. R

    Disability benefits - How much do you receive?

    Ok thahks. It seems if you have enough credits (roughly $1100 of salary per credit) so about 4 credits per year is all they apply anything over that is not needed. So basically if you have at least $4400 in income per year to qualify. Does that sound right. So if you were making $30k per year...
  14. R

    Disability benefits - How much do you receive?

    Ok thahks. It seems if you have enough credits (roughly $1100 of salary per credit) so about 4 credits per year is all they apply anything over that is not needed. So basically if you have at least $4400 in income per year to qualify. Does that sound right. So if you were making $30k per year...
  15. R

    stretching

    I have a "stretch stick" that I made to do so, works great to stretch the interstitial muscles. It is bascically a broom stick with foam padding wrapped around it (like a swim noodle or plumbing pipe insulation). I taped it with duct tape and it works to stretch my arms and back and shoulders.
  16. R

    stretching

    I have a "stretch stick" that I made to do so, works great to stretch the interstitial muscles. It is bascically a broom stick with foam padding wrapped around it (like a swim noodle or plumbing pipe insulation). I taped it with duct tape and it works to stretch my arms and back and shoulders.
  17. R

    Dextromethorphan

    Its tough, when you are getting a cold and hacking you have to subside it via cough suppressant, the problem is long term it is not good for CF, it tampers down the cilia action which leads to more infection. I know usually when I get a cold it goes to my chest and just have to deal with it...
  18. R

    Dextromethorphan

    Its tough, when you are getting a cold and hacking you have to subside it via cough suppressant, the problem is long term it is not good for CF, it tampers down the cilia action which leads to more infection. I know usually when I get a cold it goes to my chest and just have to deal with it...
  19. R

    Disability benefits - How much do you receive?

    Disability benefits - How much do you receive? In researching SSDI and the requirements of such I was looking to see about how many years one needs to work to receive enough credits and figure out what the monthly benefit amount on average is. I know the parameters of the low end and high end...
  20. R

    Disability benefits - How much do you receive?

    Disability benefits - How much do you receive? In researching SSDI and the requirements of such I was looking to see about how many years one needs to work to receive enough credits and figure out what the monthly benefit amount on average is. I know the parameters of the low end and high end...
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