I've had my vitiligo on remission for a while and I've been doing well with Protopic on my face since I'm getting my pigmentation back. Yesterday I found some new patches on my hands and legs and it ruined my day... I have tried so hard to stay positive and even though my main focus is my face, it hurts me when I see more and more spots showing up....
How do YOU cope with new patches after remission?...
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It's not cancer Lady Jo so lets stop using the word remission :-) the right term to use is reappearance of your Vitiligo I just wanted to let you know this sweetheart !!!!
Actually remission is the right term, it isn't a word that's exclusive to cancer. It's a term that's used in conjunction with any chronic illness. All of my doctors have used it when describing the course vitiligo has taken in my life.
I havent done any repigmentation therapy, but i do notice new white patches, lately i've been getting them on my face.. it makes me feel very depressed and i dont know how to cope with it..
Domenic Polla > Sarah BradfordFebruary 23, 2010 at 5:28pm
ive gotten a few new patches over the last 3-4 months. One in particular spread fast and has gotten pretty big. it seems whenever I reach a level of comfort or confidence with the current level of spread, existing patches get bigger or new ones introduce to knock me back down.
Sarah Bradford > Domenic PollaFebruary 24, 2010 at 1:26pm
exactly!!!
i was just starting to gain my confidence back and even start wearing short sleeves to school (my vit is mostly on my arms) but now tha i noticed this new spot on my face, i feel like i'm at ground zero again
This is exactly what I feel when I discover new patches. There are also a lot of days ruined because I think a new patch is appearing, and a few days later I realize it is only uneven tanning.
To me, the fact that vitiligo expands is the thing that drives us crazy whis this disease. Again, medecine should first aim at stabilizing the pigment, more than curing the existing patches.
Like many people with vitiligo, I cannot believe that no cure is possible. But I honnestly think that medical research is not well structured. Statistics from various tests are not consolidated, treatments do not follow protocols, etc. This is very frustrating.
I actually, interviewed a couple of doctors. My straight question to them was: Why medical community pretty much ignores Vitiligo and its research. Why we never hear any research updates, even in scientific journals. Basically, why less importance ?
Both Dermatologists indicated that, Vitiligo is NOT a life threatening disease. They could NOT recall even a single case of death. This only impacts people who give importance to costmetic appearance.
I did not know what to say. Simply disagreed with both of them. This attitude is really not fair at all......
Replies
It's not cancer Lady Jo so lets stop using the word remission :-) the right term to use is reappearance of your Vitiligo I just wanted to let you know this sweetheart !!!!
Another example of it being used in conjunction with vitiligo is here:
http://www.mayoclinic.org/medical-edge-newspaper-2009/sep-11b.html
i was just starting to gain my confidence back and even start wearing short sleeves to school (my vit is mostly on my arms) but now tha i noticed this new spot on my face, i feel like i'm at ground zero again
To me, the fact that vitiligo expands is the thing that drives us crazy whis this disease. Again, medecine should first aim at stabilizing the pigment, more than curing the existing patches.
Like many people with vitiligo, I cannot believe that no cure is possible. But I honnestly think that medical research is not well structured. Statistics from various tests are not consolidated, treatments do not follow protocols, etc. This is very frustrating.
I actually, interviewed a couple of doctors. My straight question to them was: Why medical community pretty much ignores Vitiligo and its research. Why we never hear any research updates, even in scientific journals. Basically, why less importance ?
Both Dermatologists indicated that, Vitiligo is NOT a life threatening disease. They could NOT recall even a single case of death. This only impacts people who give importance to costmetic appearance.
I did not know what to say. Simply disagreed with both of them. This attitude is really not fair at all......