Trainee Clinical Psychologist/Lead researcher: Nick Taylor of Sheffield University UK is conducting a study on ‘Experience of living with vitiligo in Nigeria: A collaborative qualitative study’.
Supervisor: Dr Andrew Thompson
Advisor: Graham Jones
Nigeria collaborator is VITSAF (Vitiligo Support and Awareness Foundation): Ogo Maduewesi
and
Tomi Lasebikan: Sheffield University
The entire study will last about 3months starting with some online discussions and 1week interview in Lagos Nigeria sometime in October. Participation in the study is free and light refreshment will be served. Your information will be kept confidential.
Are you interested?
If you are interested, please contact:
Ogo Maduewesi
On vitsaf@vitsaf.org, 234702 516 5280, 234806 363 8030 and or
Nick Taylor
Thanks and please do share.
]]>Theme – Vitiligo Awareness – Steps to Vitiligo Research and Cure
We started planning for 1st West African Vitiligo Conference, theme ‘Naturalistic Approach to Managing Vitiligo’ scheduled to hold March 22 – 24, 2012. Due to some challenges beyond our control, the conference couldn’t hold, but was postponed to October 18-20, 2012 now African Vitiligo Conference, Stakeholders Conference now tagged – ‘What’s new? Where does Africa stand?’ W had a Special vitiligo Support group meeting instead with a special guest from USA in person of Dr. Yan Valle, CEO Vitiligo Research Foundation.
It was a meeting not pre-planned on a model to take and yes it does go its own way. It ended up a very emotional, appreciative and eye opening meeting for both individuals with vitiligo, press and other participants. It was a very touching story sharing sessions, almost everyone opened up and bared it all, challenges, impact of VITSAF on their lives, their expectations, frustrations (especially with treatment) and psychological challenges. The meeting informed our new concept and approach to the conference which has now changed from patient-centered conference to stakeholder’s conference, Africa Vitiligo Conference. All stories shared pointed to the huge need for Vitiligo Awareness thus our theme for the meeting ‘Vitiligo Awareness – Steps to Vitiligo Research and Cure’. 
Dr. Yan Valle spoke about vitiligo research and some treatments that induce good results in patients (though we do not have such variety of medication in Africa presently). World Vitiligo Day – 25June was discussed extensively as a step to awaken consciousness of vitiligo and willingness to act amongst the medical community.
World Vitiligo Day -25june initiative which we pioneered was elaborated upon and presented officially in the meeting by Dr. Yan Valle who threw more light on the importance to all press, patients and other friends and family present. All friends and family present signed the petition (on www.25june.org) which had started about a year ago, to date there are over 1,200 signatures signed globally http://www.petitions24.com/signatures/world_vitiligo_day_-_june_25th. We are presently collaborating and partnering with the prestigious Vitiligo Research Foundation on the 25june initiative. There is a dedicated website www.25june.org for the World Vitiligo Day campaign, please get on there or here www.vitsaf.org to support our campaign by signing our petition. We are working towards June 25, 2012 for another Vitiligo Awareness Day – World Vitiligo Day
Outcome of the meeting – it has been proven once again that extensive Vitiligo Awareness/enlightenment is the first step to finding cure and encouraging Research especially in Africa to help improve Quality of Life of persons living with vitiligo. Vitiligo is said not to be life threatening yet a condition filled with emotional and psychological violence. Till everyone becomes aware of Vitiligo, till it comes to World Centre stage, till it becomes a known condition to the man on the street, till the word Vitiligo becomes as common as Cancer, Malaria etc we are not relenting. Please join us in this journey there is a dedicated website www.25june.org for the World Vitiligo Day campaign, please get on there to support our campaign by signing our petition. Thank you.
To Collageo Communications, Channels TV and Radio Stations, print media (Guardian Newspaper, National Daily, This Day….) we appreciate you, thank you all for all you do, we couldn’t have done it or gotten to where we are today without you.
We remain eternally grateful to you TV Continental (TVC) and Nigeria Television Authority (NTA)
Please follow the link for full pictures of the event http://www.facebook.com/media/set/?set=a.3076125936772.134809.1072412559&type=3
VITSAF News
]]>African Vitiligo Conference Announcement
The March proposed conference was postponed to October, we had a special Support group meeting in March in place of the conference find the report http://www.vitsaf.org/vitsaf-vitiligo-special-support-meeting-22nd-mar-2012-report. We are sorry for coming late with it, we have been having some challenges updating the website, we are back now to serve you much better.
Brief details of the upcoming conference on http://www.vitsaf.org/events/2012avc
African Vitiligo Conference (AVC)
Theme – ‘What’s new? Where does Africa stand?’
Stakeholders Conference
Date – – 18th – 20th October, 2012
Location – Lagos, Nigeria
PURPOSE:
To awake consciousness of Vitiligo, willingness to act amongst the medical community and support patients to participate in their own healing.
The objectives of the African Vitiligo Conference (AVC) are:
- To draw attention to the condition;
- To provide a forum for African researchers and others from around the World to exchange experiences, promote global exchange of good practices and strengthen cooperation in this field.
- To provide those living Vitiligo with guidance on managing and living with their condition.
- To build the capacity of the vitiligo support groups, health sector representatives, NGOS’ in Africa to enable support for health care needs of the affected regardless of socio-economic situations.
- To raise the profile of psychological and psychosocial impact of Vitiligo and skin imperfections on affected persons, amongst both health sector and the general public.
Change in Date of the upcoming Conference
We regret to announce the slight change in date of our proposed Conference scheduled to hold from 22 – 24 March now holding from 21 – 23rd March, this is due to circumstances beyond our control. We truly regret all inconviniences. Looking forward to seeing you there. It promises to be great. This event is being put together just for the patient as instant or miraculous ways managing and getting rid of Vitiligo is all the needs of vast majority living with Vitiligo especially Nigerians.
1st Int’l Vitiligo Conference in West Africa with Theme – Naturalistic Approach to Vitiligo and Skin imperfections (NAVSI) – a patient centered Conference, holding in Lagos 21 – 23 March 2012.
Key Int’l and local Speakers
- Keynote Speaker – Lee Thomas (author Turning White, a memoir of change – www.leethomas.com)
- Dr. Andrew Thompson, (a Reader in Clinical Psychology, and Chartered and Registered Clinical and Health Psychologist, at the University of Sheffield, UK. His current research – developing psychological interventions aimed at assisting people to improve their confidence and manage anxiety associated with worries about appearance http://www.shef.ac.uk/psychology/staff/academic/andrew-thompson.html)
- Dr. Wanakee Hill (a Naturopath, natural healing for Vitiligo, Author Nutritional Approach to Vitiligo & Other Autoimmune Diseases www.wellnesswell.net)
- Prof Abel Onunu – Professor in Dermatology, UBTH, Benin
- Vitiligo patients of Vitiligo Support groups from four African Countries
Special Int’l guest – Yan Valle – CEO, Vitiligo Research Foundation (VRF) www.vrfoundation.org
Also using this opportunity to inform you that we will be finalizing our Study on psychological aspect of Vitiligo on Nigerians with Nick Taylor, researcher and supervisor Dr. Andrew Thompson from Sheffield University UK, 19 – 20th March, 2012.
More on info on our African Vitiligo Conference page
VITSAF News…
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People say lay down yourself and love others more…..
- What can be wrong in preparing yourself to give and receive that which we most desire and which is the greatest, LOVE?
- Is it possible to offer someone mango when you do not have mango?
- Is it possible that you enter Maths exam hall and decide to write English on your answer script and pass the exams?
- How can one be happy with someone who is not meeting his/her desire and yet wants him/her to stay?
In counseling with persons with Vitiligo, the greatest desire of women has been to find love and I have always asked, is it possible to find love and love as you are body mind and spirit without being filled with love yourself? I usually get an answer, I know getting someone who loves me will change things and I usually ask someone who will love you and expect you to love him back. Its true that there are rare men that will find one attractive even in that situation and decides to help build her up, how many of them are out there and how many have you met? A lady told me that she cannot be happy and cannot be open to a relationship till she repigments fully and I asked her
- Do you know how long that will take?
- Do you know if you have that number of years to live?
- Does your happiness now depends on a man
She told me that she will be alive for it to happen, but cannot just think of exposing her hand to anyone now. For me, I cannot deny myself the happiness, I know it is not easy to get there, but with the will to change, step by step efforts and the mirror game I discussed below, we will be getting into it. Don’t get me wrong, Love is a beautiful thing which everyone really needs to experience genuinely in their lifetime. My question is, is it about the opposite sex? I have been privileged to talk also with the married who would usually tell me my spouse has been very supportive, but I just can’t handle the psychological aspects especially when dealing with the public. This goes to show that the opposite sex is actually not the solution, but self. What about who we really are and what we want to achieve in life? My findings and experience, when you find that self-love, its beautiful, you glow with so much love for everyone around you, you judge less who is staring and who is not staring, you don’t remember the comments, you are open to love and to change and everything is beautiful. This self-love can only be effective when you have accepted yourself wholly.
- It’s important that we learn to accept what we cannot change, work on the ones we can improve ourselves. God has raised so many creative and innovative minds who has been able to put into writing and visuals certain guide for a great life, explore them while you learn from your own experiences too
- We should be practical and creative enough to know that accepting and loving ourselves is no sin, it’s the beginning of the change we desire and help we need,
- Why become reluctant to yourself because your religion make you believe so, remember it’s the understanding of your leader there and God never says we should trash our own understanding and discernment for one leader. Ehp 5:29 says for no one ever hated his own flesh, but nourishes and cherishes it………
- Prayer is the greatest, we should pray and follow –up with actions. Can prayer choose the right clothes for that meeting for you? We pray for His guide and live up in faith.
- It’s important that we know that even persons we see as normal are hurting also in one way or the other, they also get rejected in different areas
- It’s important to identify that which is unique about us and celebrate it, we must not wait for people to celebrate us, atimes It may never come till we begin it ourselves
- Feed your body healthily, don’t just feed it anything, take your time and show some love to yourself. When you are in great health, you function well; health is your right and entitlement. It starts with you
- Forgive and set yourself free
- The mirror game really helps and it has become part of me in so many ways, will really encourage you to embrace it..
- Tell the beautiful lady/man you see in the mirror how much you love and appreciate him/her
- Discuss with him/her your plans and usually he/she will reason with you
- Let him/her know how much you would want to take care of it but trying to your own capacity, believe me he/she usually understands and play along
When you Accept and Love yourself and live it, the problem is more than 50% solved, it’s a simple life, let’s stop making it complicated.
Believe in your dreams, confess and affirm what you believe and what you want!
Love and accept yourself wholly so you can live better and Love all around you and greatly Love that special person with great and unadulterated Love!
Love is a beautiful thing, it begins with you!
When we talk about self-love, it usually sounds vain especially in our society where we have misunderstood so much due to religion and cultural beliefs. Putting in a simpler way, straightway self-love is an aftermath of self-acceptance because it is when we have accepted something that we love or is it possible to love what we do not accept?
For some reasons and excessive demand of the society, humans are disassociating from themselves by day, worrying just about every little thing even worrying about not breathing in a particular style. My question is who sets this standard and who approved them to be standard setters? It is hard for persons without visual appearance challenged; the ones with unusual visual appearance are actually not included anywhere, the media and the fashion industry have not helped matters too.
Here I ask, why should we continue to let a standard set by someone whom if we get close to may not be worth our time at all, but because the society has a way of making those of us who do not know ourselves worry about imperfection that does not exist. Yes when the imperfection is not our making and we cannot do anything about it, it does not exist, it is just the way it is like anyother. The society tries to set standard of ideal height, ideal foot, ideal shoe size, ideal body shape, ideal talking pattern, ideal way of looking, of walking, running, standing even when we have different body sizes, postures, shapes, different orientation and from different origins…its endless… as if any of these can be achieved by human effort without any adverse effect or losing something natural to achieve it.
The craziest is body weight, yes I was worried about my weight few months ago because I was feeling sick, I had never gotten to that size and suddenly bloated up, though noticed two things from my journey to that point, in managing my Vitiligo naturally and as I researched about, I had found out that I have had indigestive problems all my life which suddenly corrected and took me unawares, so foods I used to eat that comes out to the extent I chewed it when I excrete, suddenly started digesting fully. It affected my total wellbeing, fatigue, knee pains and all of that increased, I knew without seeking any Doctors advise that I had to get back fully to my healthy eating, cleansing and exercises, I did mostly with my raw plant-based nutrition and not planning one bit to retrace again. Today it has lead me to my new social enterprise www.vogohealthies.gnbo.com.ng, it has taken off with little campaign. I shared this because I had a reason to get healthier as I know the importance and not wait till am wheeled into an ambulance.
But what’s truly our reason for most of the things we are obsessed about? A musician comes out with a particular body shape (she maybe so uncomfortable with) and because she breaks through everybody starts working to be that, why don’t we work to get ourselves to be whom someone else wants to be?
Self-Acceptance is accepting self wholly, the flaws (if you see any in you), the fat legs, the unshaped nose, the short fingers etc. when it is about the ones you can change like getting a toned arm, laps, flat tummy then we work towards it instead of hating and rejecting self. Funnily hating and rejecting self has never changed that thing we do not want rather it worsens it even our Vitiligo. I would rather take my time and understudy certain therapy that helps Vitiligo and choose one to follow for atleast a year before taking decisions to move to another. It would be worth it that hating the body that carries you about, bringing you the achievements, giving you life and taking care of all your inners. Ever thought of what it would be like if the body gets angry and says no to you someday? When we love someone we go out of our way to do everything to make him happy, why can’t we do same for self? We accept the opposite sex the way they are especially when we see what we want in them, why can’t we then accept self the way we are for better living and greater productivity?
Continues…..
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VITSAF Conference 2012
- VITSAF Conference 2012
some point.
And every woman can always use a little more love. So with that in mind, I wrote you a \"Love Letter\" (PDF). It's short, to the point and I even painted you some pictures. The Pleasure Nutritionist Daphne http://thepleasurenutritionist.com]]>
1st Int’l Conference on Vitiligo in West Africa
Theme – Naturalistic Approach to Vitiligo and Skin imperfections® (NAVSI)Patient Centered Conference
22-24 March 2012 in Lagos, Nigeria
Dear Friends and all Concerned,
It is our very great pleasure to invite you to the 1st biennial Vitiligo Conference that will be held in the commercial city of Lagos, commercial city of Nigeria.
The 1st Vitiligo conference will be interesting! Like everyother conference held in different places in the World, for the first time in the history of Vitiligo Conferences we are organizing a patient-centered conference tackling the direct and primary need of persons distressed with Vitiligo. The scientific committee will comprise of Nigerian dermatologists and their counterparts.
The theme of this Congress is “Naturalistic Approach to Vitiligo and Skin imperfections® (NAVSI)”. This emphasizes the need to learn natural ways of managing and living with Vitiligo and the central importance of skin in our health and well-being. We expect Vitiligo patients and their families from across Africa, Dermatologists, and Clinical Psychologists, State and Federal Health Ministries and Health organization. Our keynote speaker is Lee Thomas, we are having some renowed resource person’s in area of natural management which includes Dr. Wanakee Hill (a Dr. in Naturopath), Dr. Andrew Thompsons, a clinical psychologist who has been working in area of appearance amongst others. Nigerian, regional and local speakers will provide top level knowledge in basic as well as clinical dermatology, Vitiligo and Skin imperfections, cosmetic dermatology. During the break out Workshop sessions, delegates from health organizations and ministry of health will have the opportunity to learn and understand all the basics of Vitiligo as a benign and yet chronic and miserable condition with the leaders of dermatology and medical science in Nigeria.
Join us in Lagos, March 22-24th, 2012 for what promises to be a wonderful, revealing, educative and a fulfilling event!
Details NAVSI
]]>February 2, 2012
VR Foundation
World’s First Dedicated Vitiligo BioBank
VR Foundation is proud to present world’s first dedicated Vitiligo BioBank – a repository of genetic material from patients and related unaffected individuals, together with associated health records.
The Vitiligo BioBank aims to promote coordinated large-scale biomarker discovery and validation, facilitate the identification of susceptibility genes, environmental and lifestyle factors and etiological pathways for vitiligo, and aid the design of treatments for this disease.
The BioBank currently holds 150+ samples, including 75+ DNA profiles, with scheduled weekly additions. Vitiligo BioBank provides storage facilities for hair follicles, co-morbid diseases material, and the physical collection of material that may be vulnerable to disposal through completion of research projects.
The Vitiligo BioBank is operated by the Center For Innovative Biotechnologies ALLELE based in Moscow, Russia. Importantly, it will work with the active participation of the Vitinomics.net patients’ community, and share benefits with them.
VR Foundation is a non-profit philanthropic organization funding and fast-tracking medical research globally, firmly committed to curing Vitiligo.
For further information:
VR Foundation (www.vrfoundation.org – www.vitinomics.net )
General inquiries: Alessandra Fabbri Palmieri (a.palmieri@vrfoundation.org)
Telephone Number: +39 328 6214588
Scientific inquiries: Dr. Igor Korobko, Chief Scientific Director (i.korobko@vrfoundation.org)
Business & administration matters: Dr. Yan Valle, VRF CEO (yan@vrfoundation.org)
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