Cystic Fibrosis University project and Website, comments/opinions

C

CFstudent

New member
Hi there everyone,

My name is Craig, I'm a fourth year Bio-Medical Sciences student at the University of Guelph, in Onario Canada.

I'm doing a Service Based Learning project, that is aimed at giving some baseline information about CF to expecting parents. A big chunk of this project will be a website that I have put together for my group, and I'd love to hear opinions/comments/suggestions from people who really know what it's like to deal with this extremely difficult situation.

A section of this project also involves guaging how our message was received by the community and I'd love to include some of these comments.

I'd like to add that I am amazed at how well cysticfibrosis.com is put together, and can only begin to imagine the kind of support that a community like this would provide.

Thank you all for your time,

It is still under construction, but if you have the time to check it out here is a link.

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington
">http://web.mac.com/craigetherington
</a>

**EDIT** I think you may need to copy and paste, not sure that the link is working.
 
C

CFstudent

New member
Hi there everyone,

My name is Craig, I'm a fourth year Bio-Medical Sciences student at the University of Guelph, in Onario Canada.

I'm doing a Service Based Learning project, that is aimed at giving some baseline information about CF to expecting parents. A big chunk of this project will be a website that I have put together for my group, and I'd love to hear opinions/comments/suggestions from people who really know what it's like to deal with this extremely difficult situation.

A section of this project also involves guaging how our message was received by the community and I'd love to include some of these comments.

I'd like to add that I am amazed at how well cysticfibrosis.com is put together, and can only begin to imagine the kind of support that a community like this would provide.

Thank you all for your time,

It is still under construction, but if you have the time to check it out here is a link.

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington
">http://web.mac.com/craigetherington
</a>

**EDIT** I think you may need to copy and paste, not sure that the link is working.
 
C

CFstudent

New member
Hi there everyone,

My name is Craig, I'm a fourth year Bio-Medical Sciences student at the University of Guelph, in Onario Canada.

I'm doing a Service Based Learning project, that is aimed at giving some baseline information about CF to expecting parents. A big chunk of this project will be a website that I have put together for my group, and I'd love to hear opinions/comments/suggestions from people who really know what it's like to deal with this extremely difficult situation.

A section of this project also involves guaging how our message was received by the community and I'd love to include some of these comments.

I'd like to add that I am amazed at how well cysticfibrosis.com is put together, and can only begin to imagine the kind of support that a community like this would provide.

Thank you all for your time,

It is still under construction, but if you have the time to check it out here is a link.

<a target=_blank class=ftalternatingbarlinklarge href="http://web.mac.com/craigetherington
">http://web.mac.com/craigetherington
</a>

**EDIT** I think you may need to copy and paste, not sure that the link is working.
 
S

sweetwhite30

New member
hey greg i think thats a wonderful thing your going to do but please make a section for the different common mutations and exactly whats the issues with the mutation if you can do that......
 
S

sweetwhite30

New member
hey greg i think thats a wonderful thing your going to do but please make a section for the different common mutations and exactly whats the issues with the mutation if you can do that......
 
S

sweetwhite30

New member
hey greg i think thats a wonderful thing your going to do but please make a section for the different common mutations and exactly whats the issues with the mutation if you can do that......
 
J

JRPandTJP

New member
If this is geared toward expecting parents, I would change the image used on the home page. It is neither useful or attractive in my opinion.

From the traditional (western) medicine side of the equation, I suggest you read Amy's blog (<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=5)">http://blogs.cysticfibrosis.com/index.cfm?forumid=5)</a> to get a wonderful viewpoint of what good medical care should be about. Dr. Warwick has one of the highest patient averages in the world and has been around almost as long as the disease has had a name. His response about the treatment and attitude a care professionals with their patients is very enlightening, something all doctors should try to achieve.

If your site/project is trying to also demonstrate the various "alternative and complimentary" treatments available you really need to go a bit further. We are big proponents for alternative modalities and you've missed a few wonderful treatments. Most of the ones you list are standard of care within the "western" approach such as chest physio, standard ADEK vitamins, breathing treatments, ect. A G-tube is not a natural or alternative therapy, it is a last resport for children who are unable to gain through traditional calorie programs. These need to be moved to the "western" approach as they are all part of preventative and symptom control.

Alternative therapies are other healing modalities which view the body as a "whole" system and treats as such. Naturopathy, homeopathy, accupuncture & Traditional Chinese Medicine (TCM), kinesiology, herbal therapy, Crataegus (flavanoid), changing and working with the biochemistry of the body through supplements/substances like taurine (helps fat absorption), L-argenine, glutithione (powerful anitoxident not released in the CF lung/body) and anti-inflammatory herbs like tumeric, ginger, holy basil, skullcap and others. I feel yoga and body work could also be an area for exploration in health and healing with regard to CF.

Also discussion about the importance of diet is essential and in my opinion falls under complimentary therapy because the current recommendations about it are severely lacking and incomplete. The importance of breastfeeding for new moms should be recommended and supported over anything else. Discussion about DHA - cooking and using omega 3 rich oils (olive, walnut, canola, flax) and use of daily probiotics is also essential. Diet rich in fiber, complex carbs (little to no simple carbs or refined sugar), organic fruits/veggies/meats is of the most imortance.

I am finishing a web site on most of these topics which is due out in December. The breastfeeding site is already available if you would like to view it to get a better understanding what some moms go through before diagnosis and after it might help. I also have alot of links and studies you may find useful. You can see the general skeleton of the nutrition support site to get an idea of what will be there when I complete it, but it may help as it is.

Best of luck on your project and please PM me if you require more information.

Warmly,
Jody

www.cfnutrition4life.com
 
J

JRPandTJP

New member
If this is geared toward expecting parents, I would change the image used on the home page. It is neither useful or attractive in my opinion.

From the traditional (western) medicine side of the equation, I suggest you read Amy's blog (<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=5)">http://blogs.cysticfibrosis.com/index.cfm?forumid=5)</a> to get a wonderful viewpoint of what good medical care should be about. Dr. Warwick has one of the highest patient averages in the world and has been around almost as long as the disease has had a name. His response about the treatment and attitude a care professionals with their patients is very enlightening, something all doctors should try to achieve.

If your site/project is trying to also demonstrate the various "alternative and complimentary" treatments available you really need to go a bit further. We are big proponents for alternative modalities and you've missed a few wonderful treatments. Most of the ones you list are standard of care within the "western" approach such as chest physio, standard ADEK vitamins, breathing treatments, ect. A G-tube is not a natural or alternative therapy, it is a last resport for children who are unable to gain through traditional calorie programs. These need to be moved to the "western" approach as they are all part of preventative and symptom control.

Alternative therapies are other healing modalities which view the body as a "whole" system and treats as such. Naturopathy, homeopathy, accupuncture & Traditional Chinese Medicine (TCM), kinesiology, herbal therapy, Crataegus (flavanoid), changing and working with the biochemistry of the body through supplements/substances like taurine (helps fat absorption), L-argenine, glutithione (powerful anitoxident not released in the CF lung/body) and anti-inflammatory herbs like tumeric, ginger, holy basil, skullcap and others. I feel yoga and body work could also be an area for exploration in health and healing with regard to CF.

Also discussion about the importance of diet is essential and in my opinion falls under complimentary therapy because the current recommendations about it are severely lacking and incomplete. The importance of breastfeeding for new moms should be recommended and supported over anything else. Discussion about DHA - cooking and using omega 3 rich oils (olive, walnut, canola, flax) and use of daily probiotics is also essential. Diet rich in fiber, complex carbs (little to no simple carbs or refined sugar), organic fruits/veggies/meats is of the most imortance.

I am finishing a web site on most of these topics which is due out in December. The breastfeeding site is already available if you would like to view it to get a better understanding what some moms go through before diagnosis and after it might help. I also have alot of links and studies you may find useful. You can see the general skeleton of the nutrition support site to get an idea of what will be there when I complete it, but it may help as it is.

Best of luck on your project and please PM me if you require more information.

Warmly,
Jody

www.cfnutrition4life.com
 
J

JRPandTJP

New member
If this is geared toward expecting parents, I would change the image used on the home page. It is neither useful or attractive in my opinion.

From the traditional (western) medicine side of the equation, I suggest you read Amy's blog (<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/index.cfm?forumid=5)">http://blogs.cysticfibrosis.com/index.cfm?forumid=5)</a> to get a wonderful viewpoint of what good medical care should be about. Dr. Warwick has one of the highest patient averages in the world and has been around almost as long as the disease has had a name. His response about the treatment and attitude a care professionals with their patients is very enlightening, something all doctors should try to achieve.

If your site/project is trying to also demonstrate the various "alternative and complimentary" treatments available you really need to go a bit further. We are big proponents for alternative modalities and you've missed a few wonderful treatments. Most of the ones you list are standard of care within the "western" approach such as chest physio, standard ADEK vitamins, breathing treatments, ect. A G-tube is not a natural or alternative therapy, it is a last resport for children who are unable to gain through traditional calorie programs. These need to be moved to the "western" approach as they are all part of preventative and symptom control.

Alternative therapies are other healing modalities which view the body as a "whole" system and treats as such. Naturopathy, homeopathy, accupuncture & Traditional Chinese Medicine (TCM), kinesiology, herbal therapy, Crataegus (flavanoid), changing and working with the biochemistry of the body through supplements/substances like taurine (helps fat absorption), L-argenine, glutithione (powerful anitoxident not released in the CF lung/body) and anti-inflammatory herbs like tumeric, ginger, holy basil, skullcap and others. I feel yoga and body work could also be an area for exploration in health and healing with regard to CF.

Also discussion about the importance of diet is essential and in my opinion falls under complimentary therapy because the current recommendations about it are severely lacking and incomplete. The importance of breastfeeding for new moms should be recommended and supported over anything else. Discussion about DHA - cooking and using omega 3 rich oils (olive, walnut, canola, flax) and use of daily probiotics is also essential. Diet rich in fiber, complex carbs (little to no simple carbs or refined sugar), organic fruits/veggies/meats is of the most imortance.

I am finishing a web site on most of these topics which is due out in December. The breastfeeding site is already available if you would like to view it to get a better understanding what some moms go through before diagnosis and after it might help. I also have alot of links and studies you may find useful. You can see the general skeleton of the nutrition support site to get an idea of what will be there when I complete it, but it may help as it is.

Best of luck on your project and please PM me if you require more information.

Warmly,
Jody

www.cfnutrition4life.com
 
C

CFstudent

New member
Hey there JRPandTJP,

I fully agree with your suggestions on Western vs. Comp/Alternative treatments, but the problem is that I have to work within my Prof's definitions of these things. I realize that most of the treatments I have grouped as Comp/Alternative are actually the mainstays of CF therapy, and are recommended by treating Physicians, but according to his definition Western treatment is only those things which have strong primary research support, those that the exact mechanisms of actions are known for, those that have proven effective long term... and so on. For CF since a lot of the pathologies are not easily explained, these are hard to evaluate (especially the pathways). Believe me I side with you, but for these reasons I've had to play to him a bit.

I'm working with 4 other people, and they've done the "research" on the other sections, I mostly covered the Bio + Genetics and edited their stuff, I realize this site is nowhere near a complete guide though.

I also fully agree with changing the front pic. If anyone has any suggestions for a replacement I'd love to see them, hopefully something a little more inspiring.

Thanks everyone.
 
C

CFstudent

New member
Hey there JRPandTJP,

I fully agree with your suggestions on Western vs. Comp/Alternative treatments, but the problem is that I have to work within my Prof's definitions of these things. I realize that most of the treatments I have grouped as Comp/Alternative are actually the mainstays of CF therapy, and are recommended by treating Physicians, but according to his definition Western treatment is only those things which have strong primary research support, those that the exact mechanisms of actions are known for, those that have proven effective long term... and so on. For CF since a lot of the pathologies are not easily explained, these are hard to evaluate (especially the pathways). Believe me I side with you, but for these reasons I've had to play to him a bit.

I'm working with 4 other people, and they've done the "research" on the other sections, I mostly covered the Bio + Genetics and edited their stuff, I realize this site is nowhere near a complete guide though.

I also fully agree with changing the front pic. If anyone has any suggestions for a replacement I'd love to see them, hopefully something a little more inspiring.

Thanks everyone.
 
C

CFstudent

New member
Hey there JRPandTJP,

I fully agree with your suggestions on Western vs. Comp/Alternative treatments, but the problem is that I have to work within my Prof's definitions of these things. I realize that most of the treatments I have grouped as Comp/Alternative are actually the mainstays of CF therapy, and are recommended by treating Physicians, but according to his definition Western treatment is only those things which have strong primary research support, those that the exact mechanisms of actions are known for, those that have proven effective long term... and so on. For CF since a lot of the pathologies are not easily explained, these are hard to evaluate (especially the pathways). Believe me I side with you, but for these reasons I've had to play to him a bit.

I'm working with 4 other people, and they've done the "research" on the other sections, I mostly covered the Bio + Genetics and edited their stuff, I realize this site is nowhere near a complete guide though.

I also fully agree with changing the front pic. If anyone has any suggestions for a replacement I'd love to see them, hopefully something a little more inspiring.

Thanks everyone.
 
J

JRPandTJP

New member
Playing to ones prof is one thing, but misinformation is another. The therapies you have listed under alternative/complimentary section are "proven" and have been used for a long time in the treatment of CF. Chest physio has been the single greatest preventative treatment in CF as Dr Warwick and Dr Mathews (now deceased) have long since proved in their work/research. Vitamins and enzymes have also been the main thing to offer patients with CF a chance at health and longevity and are obviously well proven.

The only thing on the list would be Curcumin and of all the supplemental therapies you could list, it is not the most common supplement used among CF population (although it is one). The ones I listed are common and well researched.

If you think for one second that the medications they prescribe (Pulmozyme, steriods, dialators, ect) are "exact mechanisms with known actions" this is also incorrect. It is all an experiement and for any doctor or researcher to think otherwise is misguided. These are controlled poisons which we administer to people with some range of dosage which produces the lease amount of side effects. Again, Amy's blog with Dr Warwick's perspecitve would be helpful here.

Go to SharkTank.org to view the latest research on CF pathology and pathways.

Not sure if this is going to be used by real people/patients/families, but as it is, it is not that helpful from a parent's perspective. You need to dive deeper into it and visit some of the sites I suggested to get a better picture of alt/comp medicince or leave it out.
 
J

JRPandTJP

New member
Playing to ones prof is one thing, but misinformation is another. The therapies you have listed under alternative/complimentary section are "proven" and have been used for a long time in the treatment of CF. Chest physio has been the single greatest preventative treatment in CF as Dr Warwick and Dr Mathews (now deceased) have long since proved in their work/research. Vitamins and enzymes have also been the main thing to offer patients with CF a chance at health and longevity and are obviously well proven.

The only thing on the list would be Curcumin and of all the supplemental therapies you could list, it is not the most common supplement used among CF population (although it is one). The ones I listed are common and well researched.

If you think for one second that the medications they prescribe (Pulmozyme, steriods, dialators, ect) are "exact mechanisms with known actions" this is also incorrect. It is all an experiement and for any doctor or researcher to think otherwise is misguided. These are controlled poisons which we administer to people with some range of dosage which produces the lease amount of side effects. Again, Amy's blog with Dr Warwick's perspecitve would be helpful here.

Go to SharkTank.org to view the latest research on CF pathology and pathways.

Not sure if this is going to be used by real people/patients/families, but as it is, it is not that helpful from a parent's perspective. You need to dive deeper into it and visit some of the sites I suggested to get a better picture of alt/comp medicince or leave it out.
 
J

JRPandTJP

New member
Playing to ones prof is one thing, but misinformation is another. The therapies you have listed under alternative/complimentary section are "proven" and have been used for a long time in the treatment of CF. Chest physio has been the single greatest preventative treatment in CF as Dr Warwick and Dr Mathews (now deceased) have long since proved in their work/research. Vitamins and enzymes have also been the main thing to offer patients with CF a chance at health and longevity and are obviously well proven.

The only thing on the list would be Curcumin and of all the supplemental therapies you could list, it is not the most common supplement used among CF population (although it is one). The ones I listed are common and well researched.

If you think for one second that the medications they prescribe (Pulmozyme, steriods, dialators, ect) are "exact mechanisms with known actions" this is also incorrect. It is all an experiement and for any doctor or researcher to think otherwise is misguided. These are controlled poisons which we administer to people with some range of dosage which produces the lease amount of side effects. Again, Amy's blog with Dr Warwick's perspecitve would be helpful here.

Go to SharkTank.org to view the latest research on CF pathology and pathways.

Not sure if this is going to be used by real people/patients/families, but as it is, it is not that helpful from a parent's perspective. You need to dive deeper into it and visit some of the sites I suggested to get a better picture of alt/comp medicince or leave it out.
 
C

CFstudent

New member
I think we are getting into an argument in semantics here,

I understand you feel strongly, and agree with you, I'm changing the wording and adding a disclaimer stating that a lot of what we have under comp/alternative medicine are in fact "proven" treatments and some of the main treatments used in CF treatment.

We're simpy trying to provide information on a variety of treatment strategies that really work, I think that the terminology is unfortunate, and hope it doesn't get in the way of the message.

I hope I haven't offended you, or anyone else, for that matter, I was only seeking to get some feedback and assistance. I obviously do not have the expertise and knowledge in this field that you do, hence me coming here for help. I will check out those websites you have listed, and am thankful for the resources.

Perhaps it was a mistake, sorry for offending anyone.
 
C

CFstudent

New member
I think we are getting into an argument in semantics here,

I understand you feel strongly, and agree with you, I'm changing the wording and adding a disclaimer stating that a lot of what we have under comp/alternative medicine are in fact "proven" treatments and some of the main treatments used in CF treatment.

We're simpy trying to provide information on a variety of treatment strategies that really work, I think that the terminology is unfortunate, and hope it doesn't get in the way of the message.

I hope I haven't offended you, or anyone else, for that matter, I was only seeking to get some feedback and assistance. I obviously do not have the expertise and knowledge in this field that you do, hence me coming here for help. I will check out those websites you have listed, and am thankful for the resources.

Perhaps it was a mistake, sorry for offending anyone.
 
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