Dear vitiligo sufferers,
I was thinking recently why there is no cure,or more efficient treatment for vitiligo.... Did you know that medicine concidered diabetes as a condition, not as a disease, because it was thought that diabetes sufferers had no problem with life quality (after taking insuline shots). But during the years, picture was changed...
Vitiligo...It is said that it is not a disease, but condition, simple cosmetic imperfection... Yeah right! In most of the countries vitiligo treatment is not covered by insurance companies, due to before mentioned attitude about this disease... Maybe it is our ow guilt?
Well, I can only say that grey hair is cosmetic imperfection, vitiligo is far away from that...Person who does not suffer from this disease can not see the whole dimension of this problem. How many people affected with this disease suffer from severe depression,anxiety... How many of us have problems with socialising, how many of us have problem on the job, with employment,relationships, low self esteem or giving up on some things that make us happy only because we have this disease...
I have no intention to throw depressed thoughts in this post... My point is that we have to raise our voices! Medical establishment have to hear our call for help! Medicine has find a way to turn man into woman, and vice versa, because he/she doesn't feel comfortable in his/her skin (to make things clear, i find nothing wrong with this) What is about us??? Do we feel comfortable in our skin??? Somebody will tell I embraced my body the way it is. That is great, but I am sure that accaptance in this particular case is not matter of choice, it is the only option left. I hate when I hear from people with vitiligo : " it is nothing,it doesn't hurt, it is not itchy..." That is a good point to make self comfort, but it is a bad way to send a message to medical establishment...
The most of us have heard from our dermatologist : "I am sorry,there is no cure, you will have to find a peace with this. Good luck" So we never came back to their offices, why should we? We are trying to find a way to treat ourselves on our own. From every dermatologist we will hear different advice do this do ot do that ... So I have impression that they do not know a lot about vitiligo.
We are depressed, we are forced to accept ourselves with our changed body, and we suffer in silence...
Recently I heard that there are medicines on the market that are efficient in vitiligo treatment, but they are still not presscribed for vitiligo....
Maybe medical establishment thinks that the most of us have found peace with vitiligo and they do not want to put money in some new researches.
On this community there is a lot of us, lets sign some petition, send it to some instituton,I don't know...Asking for some answers.. At least we could do is to ask that treatment would be covered by insurance .companies...Lets help researches who are working on finding a cure by monthly donations ... Asking big companies to donate researches..I don't know... I am just sick of being silent observer and waiting for some miracle to happen... I think that we need to raise our voices, to tell them how much our lifes are affected with this disese and asking them for help... I am sure that contemporary medicine can find a solution for this problem, and I am sure that if we do not ask them for help not as a individuals, but as a group of people, medicine will not give a damn of finding a cure in some reasonable period of time.
Replies
Hello Maria Djordjevic,
You should have asked the question Do we need a cure? Any ways this is all my personal views and I apologize if it will offend anyone in this forum/ community.
Problem with the humans is that they strive for what they do not have, what they do not know, what they fail to understand. This is natural curiosity. But instead of focusing on the things which we do not have we should really focus on the stuffs we have and how to use those attributes to overcome the one we do not have. This is called optimal utilization of resources. Guys focus on the beautiful things in your body in ur life I know it sounds easy but it is difficult. Since I had vitiligo when I was 5years My father tried lots of medicine and all the possible treatment. I got tired eating medicine everyday! Then when I was 14 I told my parents I do not want any treatment. I stopped medicine and my vitiligo stopped spreading. That day I told my self : " I have vitiligo and I have to live with it all my life, then why should I spend my energy and effort to something which is not under my control. My Vitiligo is not hampering me in solving problems, its not hampering me in anyother way at all. I can do all the stuffs which a normal person without Vitiligo can do. Then Why the hell I should think about this.
I started living the life of a person I have never imagined. I have taken out the appearance out of equation. When I talk to a person they do not see if I hv a vitiligo or not they see what I am as a thinker as a learned and lastly as a human.
So, My advice to all the fellow Vitiligo Friends is:
1. We are the one who do not swim with tide we swim "AGAINST" the tide.-- Keep this in mind.
2. We are just one among the billion different species in this world, then what is the issue-- We are different and will stay different. So, live your life differently, Enjoy your life differently!
Thank you
Hello Nirajkumar Pandya,
thank you for your reply and interest in this subject. I am really glad that you found a way to accept vitiligo.
But I could not agree completely with you. Vitiligo could be under our control if there were medicines... Acceptance i this particular case is great, but as I said before, I would like it to be an option, not the only option left. Vitiligo is an autoimmune disroder, sign that something in your body doesn't work as it should do (immune system) . As far as I know, for any other autoimmune condition medicine has some efficient solution, to release patients from sympthoms - except for vitiligo. If there were a medicine, I will surely took it! At least I want to spend my 30's in peace and joy.
That is why I started this discussion. I think that medicine have reached some level, so it could fight vitiligo more efficently than it does right now.
Well said Maria. I'd also like to add that if you really treat vitiligo from inside, you will be treating not only it, but your whole body against everything.
So, it's worth it, even if vitiligo patches do not re-pigment themselves.
I'd also like to say that Nirajkumar Pandya has achieved a great level by accepting vitiligo.
Dear Anitha,
I am glad that you are with us and that you find importance in asking medical comunity about new,more efficient vitiligo treatments.
I I think that we all together need to work on this subject. I was thinking about online petition or some kind of letter adressed to more vitiligo research centers,pharmacy companies or etc, which would be signed by most of us who have this " condition" . I am thinking to start writing some letter, and publish it here,so the other could add their comments, after that we need to gather as much people as posible to sign it...Maybe I am crazy, but I am sick of sitting and waiting for them for the next 30 years to find some better way of treatment....
I was speaking with many people who have vitiligo, most of them even did not visited dermatologiest, didn't try any treatment, because they know that " there was no cure " (my mother is one of them), so I am pretty much sure that doctors even don't know how many people worldwide actualy have this disease. I am sure that any one of them would try some medicine, if there was one. Pharmaceutical companies will have profit from those medications I am sure. So it is important to show to them that we are realy despair, that we want our skin color back. As long as we keep silent, they will find no interest in investing money in researches and it would be questionable if we are going to be alive for the day when they find some " cure ". As far as I am informed, they needed for about 30 years to swich treatments from pUVA to nbUVB....
From Vitiligo Research Foundation:
Why there is no drug for vitiligo yet?
Despite the dearth of medications available to treat psoriasis - a disease with similar prevalence numbers and impact on quality of life - vitiligo has no known cure or specific treatments. Few therapies can reduce or stop vitiligo symptoms for prolonged periods of time, but no single treatment works for everyone. Worse, not all of these medicines have been approved in all countries.
Since the average cost of single drug development reached $5.5 billion in late 2013, Big Pharma have little interest in developing drugs for “neglected diseases”, including vitiligo.
While efficient vitiligo treatments would clearly be in demand if available, there is little public demand for the development of such treatments. This paradox arises from the non-life-threatening nature of vitiligo and widespread awareness of it's perceived incurable nature, thus lowering the expressed demand for treatment development.
However, new clinical trials have been launched by major pharma companies in early 2016, indicating a global change in the area of vitiligo.
I sincerely hope that they will realize how huge impact vitiligo could have on person's life and mental state. Well it is true that it s not life threatening by itself...but... as I am informed, the most of the people affected with viiligo suffer from severe depression, also lot of people were on the edge, thinking about suicide...So it could be a life threatening. While vitiligo doesn't affect vital organs like heart,liver or etc... it affects mental state... Soul pain is more painfull than any other physical pain...
I am sure that every single vitiligo patient on the earth would have bought medicine, if there had been one...
(Unfortunately) There are a lot of people who suffer from this disease and they could find a profit in developing medicines for vitiligo... I will say once again - we are silent, we accepted "there is no cure" as it is just a normal thing... I think that it is not normal, I think that medicine have advanced and that there is a hope in further researches...
Also, encouraging fact is that there are approved medicines which could help vitiligo patents, but further researches should be done on this subject...
We're in the same boat, my friend.
I look in the mirror. I have had the handshake refused.
I am watching my face, my mouth, my chest, my back, other areas.
You are accurate, Maria.
So is he:
http://www.believersportal.com/wp-content/uploads/2016/10/Nick-Vuji...
For every one of us who takes his life over this, there are others given example of how those people dealt with it. We are being strong not only for ourselves, but for others.
Nick, for example, can't even attend normal toileting we take for granted, because he has no arms and no legs, yet he survives and inspires, even procreates.
God bless you, Maria. Choose good examples and remember we are examples to others.
When I'm low, please remind me to do the same.
Vitiligo International Symposium in Rome 2 -3 December 2016.
http://www.vis2016.org/
It will be a good opportunity to question the medical community. All of them will be there:
-Alain Taieb
-John E. Haris
-Caroline Le Poole
-Richard Spritz
-Mauro Picardo
-Matteo Bordignon
-and many more...
Hi Flavio,
thank you for your post. This would be a great opportunity! I hope that more members of this community will find that this would be a great chance to speak about our concerns and our despair for finding more efficient treatment or at least cure in treating vitiligo.
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