Posted by Tim on October 26, 2014 at 10:42pm in Main
Does anyone have suggestions on best practices for explaining to family and friends that you have vitiligo, what it is, and how to move forward with their support? Thanks!
You need to be a member of Vitiligo Friends to add comments!
Before this thread gets too far off topic, please remember that Protopic is meant for smaller areas and not widespread vitiligo / psoriasis.
If you have a more widespread and quickly spreading version of the disease, you may want to look into OMP (oral mini pulse) therapy or NB-UVB. OMP has been shown to be quite effective at slowing down or even stopping the progression when vitiligo is in its active stage.
Don't believe everything you read on the internet, especially personal blog websites!
Flavio,
Your posts can be very misleading to many people here, and that is provides a great disservice to people with vitilgo.
I will give you the benefit of the doubt that you mean well, but your responses are anecdotal, undefined, and unproven.
You are mixing some some established facts with a lot of supposition and pure unproven theory. Plus, you are listing/suggesting an experimental therapy, with ZERO specifics of dosages, specific types of vitamins and supplements. Do you realize how vague the list is? All vitamins and supplements are quite varied in chemical composition and strength???
Some of the 'definitions' you copied and present are accurate, but then mixed in with them are theoretical suppositions which are not in anyway universally recognized and accepted. Nothing whatsoever which is presented is conclusive; it is all experimental theory and largely based on one study. Dr.Bordignon website itself, states these are all hopeful "possibilities" In his own words:
"Disclaimer: I collect in this section a series of thoughts that only intend to explain my scientific and clinical path that led me to the hypothesis which I then demonstrated. This section contains data and personal opinions which have no academic or educational value, but are only for narrative purposes. M. Bordignon, MD, PhD."
On the other hand, you seem to be promoting a personal blogsite which gives the appearance of a certified medical source (vitiligomap.com). It presents a mixture of information based in part on established facts, but primarily based on personal interpretations.
As you can see from his own words, the doctor you quote from does NOT echo your interpretations. His own words are here, and underscore the fact that all his research is absolutely inconclusive, but may represent a step in the right direction.
He goes on to clearly state:
"The pathogenesis of vitiligo is still debated and none of the proposed model could explain properly the disease’s biology."
Assuming you are not a huckster trying to gain followers for your website and thereby profiting from the ads for internet traffic you create, you need to realize that sufferers of vitiligo are often in a vulnerable state and the unfounded theories you present as fact are potentially dangerous and counterproductive.
Yes, it is wonderful when people list what worked for them, but personal results and theoretical inconclusive studies do not prove a thing. Every once in a while, a dedicated scientist or doctor seems to discover a new possibility for effective treatment for all, but as of now, none can legitimately claim anything which even comes close to an effective universal treatment .
If your "treatment" worked for you or someone you know, great. But don't present it as a gospel truth or an medical cure; it is neither.
I get passionate about this subject because though I hate the v disorder, I dislike even more when I see people being misled. Good luck with your personal research.
I just want to help people that are lost and desperate about lack of information of what to do.
I really don't care about promoting anything because I'm a volunteer.
The reason I don't specify dosage is because anyone that contacts me, can get information in depth (including dosages).
The universal protocol is to be printed and taken to the doctor, so that they will start understanding and helping the patients, since they don't have a clue about vitiligo as you've noticed.
Regarding Doctor Matteo, he became a friend, and for contract reasons he can't guarantee anything, but he has found the cure already. It's a matter of time.
So, don't waste your time being negative and start adding value to this group.
You aren't the first person to lay claim to secret knowledge of a new cure. I am not being "negative," I am being protective of people whom I consider brothers and sisters. And, I am being very HONEST.
And no responsible doctor will take your list with no medical authentication. That would be absurd and dangerous.
When you give false hope, and present theoretical inconclusive disinformation presented as medical fact, it may be very well meaning, but by doing so you are hurting my people. And I do not think the doctor you mention would appreciate you twisting his findings and writings into a something they are not.
Contact me if the "miracle cure" becomes a proven reality.
I don't have any secret knowledge. I just put a lot spread information together to help people.
The following universal protocol is not harmful at all and has improved many vit suffererers. Specially who started following it since the begining, i.e., when first vitiligo spot appeared.
It is:
1- 9W UVB-NB Phototherapy 2x a week (30s exposure time per patch)
2- Supplementation Suggestion: - Selenium (by GNC) - Zinc (by GNC) - Copper (by GNC) - Fish Oil - Omega 3 (any mercury-free) - Probiotics (by Metagenics) - Complex-B with at least B6, B12, and Folate (by GNC) - Vitamin E (by GNC) - Vitamin D3 - Cholecalciferol - Beta Carotene with mix of carotenoids (by Pure Encapsulations)
5- Topical Creams: - Protopic 2x a day on face patches. - Elidel 1x a day on other patches. - Apply Pseudocatalase 2x a day (before 9AM and after 5PM). Then wait 15 minutes and take a 10 minute sun bath or 30 second UVB-NB phototherapy session (talk to a doctor before any phototherapy). Avoid Pseudocatalase cream on the spots that are being treated with Protopic (either one or the other).
6- Drink a 8 oz of green juice daily (green apple or kiwi, spinach, celery, broccoli, collard, watercress, and kale).
7- If you are not able to do a food allergy test, follow at least a gluten-free diet.
The cure will be provided by Dr. Matteo Bordignon, but not me.
In the meantime, when it's not available, I've been doing my best to help people to fight against this disease. The sooner you start fighting the better. The more functional is the coverage, the higher is the chance.
Friends a grown enough to understand what is helpful or not.
No, I just started developing this year. With holidays coming up I will see 400+ relatives...I have a big Hawaiian family. With my hands and face spotted, some will certainly ask why I am no longer a lovely shade of brown. Of course my parents and siblings know about my condition, but they are in medicine so they don't require a discussion of the "facts" or make me feel awkward about my change. Maybe I am just apprehensive?
Oh. i cant imagine being in that situation.. I've had vitiligo since i was about 4 years old... I usually avoid big family gatherings. they always ask to see my vitiligo, which annoys me... and they'll make some comments or try to give me "advice" , i just ignore everything they say. hopefully your family is understanding and supportive
Replies
Before this thread gets too far off topic, please remember that Protopic is meant for smaller areas and not widespread vitiligo / psoriasis.
If you have a more widespread and quickly spreading version of the disease, you may want to look into OMP (oral mini pulse) therapy or NB-UVB. OMP has been shown to be quite effective at slowing down or even stopping the progression when vitiligo is in its active stage.
More here: http://www.ncbi.nlm.nih.gov/pubmed/23815959
Michael, do you know anyone who has followed OMP?
I found it interesting due to low adverse effects.
Sounds worth a try in cases of spreading...
Don't believe everything you read on the internet, especially personal blog websites!
Flavio,
Your posts can be very misleading to many people here, and that is provides a great disservice to people with vitilgo.
I will give you the benefit of the doubt that you mean well, but your responses are anecdotal, undefined, and unproven.
You are mixing some some established facts with a lot of supposition and pure unproven theory. Plus, you are listing/suggesting an experimental therapy, with ZERO specifics of dosages, specific types of vitamins and supplements. Do you realize how vague the list is? All vitamins and supplements are quite varied in chemical composition and strength???
Some of the 'definitions' you copied and present are accurate, but then mixed in with them are theoretical suppositions which are not in anyway universally recognized and accepted. Nothing whatsoever which is presented is conclusive; it is all experimental theory and largely based on one study. Dr.Bordignon website itself, states these are all hopeful "possibilities" In his own words:
"Disclaimer: I collect in this section a series of thoughts that only intend to explain my scientific and clinical path that led me to the hypothesis which I then demonstrated. This section contains data and personal opinions which have no academic or educational value, but are only for narrative purposes. M. Bordignon, MD, PhD."
On the other hand, you seem to be promoting a personal blogsite which gives the appearance of a certified medical source (vitiligomap.com). It presents a mixture of information based in part on established facts, but primarily based on personal interpretations.
As you can see from his own words, the doctor you quote from does NOT echo your interpretations. His own words are here, and underscore the fact that all his research is absolutely inconclusive, but may represent a step in the right direction.
He goes on to clearly state:
"The pathogenesis of vitiligo is still debated and none of the proposed model could explain properly the disease’s biology."
He goes on to consistently state how his research represents only "possibilities." (http://www.researchforvitiligo.com/2/mia_protein_and_vitiligo_29108...)
The vitiligo disorder is still a huge mystery.
Assuming you are not a huckster trying to gain followers for your website and thereby profiting from the ads for internet traffic you create, you need to realize that sufferers of vitiligo are often in a vulnerable state and the unfounded theories you present as fact are potentially dangerous and counterproductive.
Yes, it is wonderful when people list what worked for them, but personal results and theoretical inconclusive studies do not prove a thing. Every once in a while, a dedicated scientist or doctor seems to discover a new possibility for effective treatment for all, but as of now, none can legitimately claim anything which even comes close to an effective universal treatment .
If your "treatment" worked for you or someone you know, great. But don't present it as a gospel truth or an medical cure; it is neither.
I get passionate about this subject because though I hate the v disorder, I dislike even more when I see people being misled.
Good luck with your personal research.
http://www.researchforvitiligo.com/2/mia_protein_and_vitiligo_29108...
Joe,
I just want to help people that are lost and desperate about lack of information of what to do.
I really don't care about promoting anything because I'm a volunteer.
The reason I don't specify dosage is because anyone that contacts me, can get information in depth (including dosages).
The universal protocol is to be printed and taken to the doctor, so that they will start understanding and helping the patients, since they don't have a clue about vitiligo as you've noticed.
Regarding Doctor Matteo, he became a friend, and for contract reasons he can't guarantee anything, but he has found the cure already. It's a matter of time.
So, don't waste your time being negative and start adding value to this group.
Flavio,
You aren't the first person to lay claim to secret knowledge of a new cure. I am not being "negative," I am being protective of people whom I consider brothers and sisters. And, I am being very HONEST.
And no responsible doctor will take your list with no medical authentication. That would be absurd and dangerous.
When you give false hope, and present theoretical inconclusive disinformation presented as medical fact, it may be very well meaning, but by doing so you are hurting my people. And I do not think the doctor you mention would appreciate you twisting his findings and writings into a something they are not.
Contact me if the "miracle cure" becomes a proven reality.
I don't have any secret knowledge. I just put a lot spread information together to help people.
The following universal protocol is not harmful at all and has improved many vit suffererers. Specially who started following it since the begining, i.e., when first vitiligo spot appeared.
It is:
1- 9W UVB-NB Phototherapy 2x a week (30s exposure time per patch)
2- Supplementation Suggestion:
- Selenium (by GNC)
- Zinc (by GNC)
- Copper (by GNC)
- Fish Oil - Omega 3 (any mercury-free)
- Probiotics (by Metagenics)
- Complex-B with at least B6, B12, and Folate (by GNC)
- Vitamin E (by GNC)
- Vitamin D3 - Cholecalciferol
- Beta Carotene with mix of carotenoids (by Pure Encapsulations)
3- Additional Anti-Oxidants:
- R Lipoic Acid (stabilized) (by Pure Encapsulations)
- L-Glutammine Powder (by Nutrabio)
- L-Methionine Powder (by Nutrabio)
- Grape Seed (by GNC)
- Polypodium Leucotomos - FernCare (by Rhyzo Care)
5- Topical Creams:
- Protopic 2x a day on face patches.
- Elidel 1x a day on other patches.
- Apply Pseudocatalase 2x a day (before 9AM and after 5PM). Then wait 15 minutes and take a 10 minute sun bath or 30 second UVB-NB phototherapy session (talk to a doctor before any phototherapy). Avoid Pseudocatalase cream on the spots that are being treated with Protopic (either one or the other).
6- Drink a 8 oz of green juice daily (green apple or kiwi, spinach, celery, broccoli, collard, watercress, and kale).
7- If you are not able to do a food allergy test, follow at least a gluten-free diet.
The cure will be provided by Dr. Matteo Bordignon, but not me.
In the meantime, when it's not available, I've been doing my best to help people to fight against this disease. The sooner you start fighting the better. The more functional is the coverage, the higher is the chance.
Friends a grown enough to understand what is helpful or not.
Cure is coming...
your family doesn't know you have vitiligo???
No, I just started developing this year. With holidays coming up I will see 400+ relatives...I have a big Hawaiian family. With my hands and face spotted, some will certainly ask why I am no longer a lovely shade of brown. Of course my parents and siblings know about my condition, but they are in medicine so they don't require a discussion of the "facts" or make me feel awkward about my change. Maybe I am just apprehensive?
Oh. i cant imagine being in that situation.. I've had vitiligo since i was about 4 years old... I usually avoid big family gatherings. they always ask to see my vitiligo, which annoys me... and they'll make some comments or try to give me "advice" , i just ignore everything they say. hopefully your family is understanding and supportive
-
1
-
2
-
3
of 3 Next