VITILIGO Friends "VITFriends"

A Vitiligo Support Community of FRIENDS

VIT Questions?

What is Vitiligo?
Vitiligo is an autoimmune disorder that cause the immune system to attack the pigment in the skin resulting in white patches.   https://ghr.nlm.nih.gov/condition/vitiligo

Vitiligo occur when immune cells destroy the cells that make brown pigment (melanocytes). This destruction is thought to be due to an autoimmune problem. An autoimmune disorder occurs when the body's immune system attacks and destroys healthy body tissue by mistake. The exact cause of vitiligo is unknown. 

https://medlineplus.gov/ency/article/000831.htm?utm_source=twitter&utm_medium=share&utm_campaign=mplus_share

Vitiligo is pronounced Vit -te -li -go (like saying...Little - I - Go/Vitiligo) it is a progressive autoimmune condition.

Vitiligo is known medically as a skin disease but many refer to Vitiligo as a skin-disorder or skin condition. Vitiligo has more social than medical significance, especially among darker skinned people. Due to destruction of the melanin (pigment) the normal skin starts loosing pigments from various parts of the body, in varying speed and extent. 

It's been suggested in literature that there is a strong genetic factor in the background of most cases, especially those who have extensive vitiligo or those who have vitiligo affecting the finger-tips, toes, lips or the genitals. The indication of strong genetic factor is observed in the form of family history of one or more of the auto-immune diseases such as vitiligo, diabetes, lupus, hypothyroid, alopecia areata, cancer, rheumatoid arthritis or allergies.

People with Vitiligo can be found all over the world, regardless of skin COLOR. However, most cases are recorded in India and Mexico. Estimated 1% - 2% of the worlds population have vitiligo as per the survey done by the American Academy of Dermatology. Males and females are affected equally, inclusive of children and it may begin at any age.   http://www.niams.nih.gov/Health_Info/Vitiligo/vitiligo_ff.asp

 

 

What Research Is Being Done on Vitiligo?

For more than a decade, research on how melanocytes play a role in vitiligo has greatly increased. This includes research on autologous melanocyte transplants. At the University of Colorado, National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) supports a large collaborative project involving families with vitiligo in the United States and the United Kingdom. To date, over 2,400 patients are involved. It is hoped that genetic analysis of these families will uncover the location--and possibly the specific gene or genes--conferring susceptibility to the disease. 

Doctors and researchers continue to look for the causes of and new treatments for vitiligo. 2019-2020 Dr. John Harris of UMass Worcester, MA is making a difference: https://www.youtube.com/watch?v=1o4AGsg8IlE&feature=youtu.be



What is the Vitiligo COLOR?


The color PURPLE was chosen as the

Vitiligo Awareness Color

at the 1st gathering on June 25, 2011.

 

The choice of June 25 as World Vitiligo Day

is a memorial to the King of Pop - Michael Jackson

who was diagnosed with Vitiligo in 1986.


What do you see?

 

What do you see when you see me?

What are you looking at?

Are you looking at me?

What's with those EYES?

Do I look like you?

Are you curious?

Do I make you sick?

ARE you NEXT?

.....You should have questions for the medical community - Do you?  Do you care to know? Could YOU...?

 

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Vitiligo draws out POETRY:

My HEART Speaks is our presidents very first collection of poems from her pain and struggle of Vitiligo, and she would love for you to have a copy.

Purchasing a copy of this book, for ONLY $18.00 is one of the ways that you can support our community.

Get this NEW - 2nd Edition available now. "My HEART Speak." 


Here is the Publisher Link:

https://www.lulu.com/en/us/shop/valarie-molyneaux/my-heart-speaks/paperback/product-1zwdq58.html

or https://smile.amazon.com/ref=smi_ext_ch_80-0618761_dl?_encoding=UTF8&ein=80-0618761&ref_=smi_chpf_redirect&ref_=smi_ext_ch_80-0618761_cl   

or  http://www.barnesandnoble.com/w/my-heart-speaks-valarie-molyneaux/1123693207?ean=9781329984790

Shop Amazonsmile - They give back to VITFriends...or use our Web-STORE: https://www.vitfriends.org/apps/webstore/

If you do not wish to make your purchase online, but would prefer to mail a check or money order for $15.99 plus $2.00 for S/H, we would be delighted to get that out to you TODAY.   
Please let us know what you desire at:  support@vitfriends.org    
 

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Valarie was honored to have a book signing hosted by Mrs. Lee Marsh a Weston, MA educator.  Valarie's work can be found in the "Weston Reads Poetry Anthology 2005. pg 115" located in the Weston Public Library.

This event was also recorded live at the Weston Public Library, Weston, MA. 

Valarie said that she was honored to have this beautiful night of poetry reading, questions, requesting for special selections to be read and book signing, with some students and parents and her husband and in-laws by her side. 


                                            *******


Here's a Talk with a Doctor.....(Los Angeles, CA)

 

Randy:  What do YOU believe to be the root cause of vitiligo?

Dr_Grimes: Well, I view vitiligo as a heterogeneous condition....there are multiple causes and pathways that can cause the destruction of melanocytes (pigment cells).

Dr_Grimes: For MOST patients, perhaps as high as 50 or 60%, it is auto-immune based. You can inherit the tendency or susceptibility...just like other auto-immune disorders.

Dr_Grimes: But there are also environmental triggers. I think that this clearly is a cause for SOME people. Exposure to certain environmental chemicals can cause vitiligo...drugs can induce vitiligo...such as a response to penicillin and other drug reactions.

Thank you Both!

 

 

 

More QUESTIONS

 

A Questionnaire from: Vitiligo Support International (VSI)


Here are my personal answers:

1.) Tell me, what’s been your personal experience with vitiligo?Not good. Having the cashier at grocery store put my change down on the counter - hurts.

2.) Think back to when you were first diagnosed with vitiligo, what was that like?

It was awful. Just to think of myself as disfigured - hurts.

3.) How can one cope with the emotional and psychological aspects of vitiligo?

Dive into GOD and the things that pleases him, that’ll work.

4.) How would you describe the obstacles of living with vitiligo?

HARD, it limit my going out, but having a loving family and great friends is so key.

5.) What options are available for you – in terms of support?

There are really NO support locally that I have found.  So I have put together this website and it has been a GREAT source of strength. Also, having Vitiligosupport.com and my church family, they are my biggest support

 

 

The Mental and Emotional State of Vitiligo.

Andre Joachim is our Vitiligo brother from Chicago and has been a member of our community for some time now, RALLYING with us both in Washington, DC 2016 and Detroit 2017.

Andre is a LPC (Licensed Professional Counselor) and NCC (National Certified Counselor) who is currently working on his PhD at Northern Illinois University and upon completion of his degree VITFriends is hoping to work with him to help the members of our community.


Here's our REPORT from Dr. Joachim:

I would like to ask the entire Vitiligo community to work with me in the future, when embarking on research exploring complexities of our emotional wellness. I have been noticing common occurrences with members of the vitiligo community, myself included. Most people think that vitiligo is only a cosmetic issue, but there are other autoimmune disorders that have an emotional component and impact on the individuals that are predisposed to the symptoms. It is my suspicion that the same may be said about vitiligo and there may be some dysregulation of emotions associated with vitiligo, although there is limited to no research on these issues. I would like some assistance from the vitiligo community to explore these concerns, having witnessed the variances of emotions that has been exhibited by some of the members of our community, which yet again includes myself. If this is the case, then we need to explore areas of research to help us understand the complexities of vitiligo that may have not been considered.

Having lupus, an immunologist once told me that when you have lupus one will have debilitating ranges of emotions. When one with lupus feels happy, they feel really happy. At times that happiness can be felt physically, and it may be felt more intense with the onset of lupus. He continued to explain that the same emotional dysregulation can be experienced with feeling of sadness. He explained the sadness can be more intense, with people who have lupus versus people who do not have lupus and takes on a physical debilitating incongruency. In that case people exhibiting those ranges of emotional dysregulations can take on physical manifestations associated with the sadness they are experiencing. It is my suspicion that those of us who have vitiligo may be exposed to the same dysregulation of emotions.

I have been in contact with many people from our community that have been experiencing a range of emotions, which can be distracting and become problematic to one?s everyday level of functioning. Some of us have secluded, isolated, and create barriers amongst family or friends because of the severity of emotional responses. It is my belief that the psychosocial impact of vitiligo needs to be explored and investigated, so I am hoping to hear your stories of situations where you may have expressed yourself inappropriately or with emotional intensity.

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